FEDERAL AUTISM 

ACTIVITIES

Better Data and More 

Coordination Needed 

to Help Avoid the 

Potential for 

Unnecessary 

Duplication

Report to Congressional Requesters

November 2013

GAO-14-16

United States Government Accountability Office
United States Government Accountability Office

Highlights of GAO-14-16, a report to 

congressional requesters

November 2013

FEDERAL AUTISM ACTIVITIES

Better Data and More Coordination Needed to Help 

Avoid the Potential for Unnecessary Duplication

Why GAO Did This Study

Autism—a developmental disorder 

involving communication and social 

impairment—is an important public 

health concern. From fiscal years 2008 

through 2012, 12 federal agencies 

awarded at least $1.4 billion to support 

autism research and other autismrelated activities. The CAA directed the 

IACC to coordinate HHS autism 

activities and monitor all federal autism 

activities. It also required the IACC to 

develop and annually update a 

strategic plan for autism research. This 

plan is organized into 7 research areas 

that contain specific objectives. 

GAO was asked to examine federal 

autism efforts. In this report, GAO 

(1) analyzes the extent to which federal 

agencies fund potentially duplicative 

autism research, and (2) assesses the 

extent to which IACC and agencies 

coordinate and monitor federal autism 

activities. GAO analyzed agencies’ 

data and documents, and interviewed 

federal agency officials and select 

nonfederal IACC members.

What GAO Recommends

GAO is recommending that (1) HHS 

improve the usefulness of IACC data to 

enhance coordination and monitoring 

of federal autism activities, and 

(2) DOD, Education, HHS, and NSF 

improve their coordination of autism 

research. HHS disagreed with the first 

recommendation stating that it was 

already making adequate efforts. The 

agencies supported the need for 

improved coordination but, except for 

DOD, disputed that any duplication 

occurs. GAO continues to believe the 

recommendations are warranted as 

discussed in the report.

What GAO Found

Eighty-four percent of the autism research projects funded by federal agencies 

had the potential to be duplicative. Of the 1,206 autism research projects funded 

by federal agencies from fiscal years 2008 through 2012, 1,018 projects were 

potentially duplicative because the projects were categorized to the same 

objectives in the Interagency Autism Coordinating Committee’s (IACC) strategic 

plan. Funding similar research on the same topic is sometimes appropriate—for 

example, for purposes of replicating or corroborating results—but in some 

instances, funding similar research may lead to unnecessary duplication. The 

potentially duplicative research projects included those funded by the 

Department of Defense (DOD), Department of Education (Education), National 

Science Foundation (NSF), and agencies within the Department of Health and 

Human Services (HHS)—Administration for Children and Families, Agency for 

Healthcare Research and Quality, Centers for Disease Control and Prevention 

(CDC), Centers for Medicare & Medicaid Services, Health Resources and 

Services Administration, National Institutes of Health (NIH), and the Substance 

Abuse and Mental Health Services Administration. Each agency funded at least 

1 autism research project in the same strategic plan objective as another agency. 

For example, 5 agencies awarded approximately $15.2 million for 20 autism 

research projects related to 1 objective to test methods to improve dissemination, 

implementation, and sustainability of evidence-based interventions, services, and 

supports in diverse community settings.

The IACC’s and federal agencies’ efforts to coordinate and monitor federal 

autism activities were limited. The IACC—composed of federal and nonfederal 

members—met regularly and issued several reports, such as a strategic plan and 

portfolio analysis—a report that provides information on autism research projects, 

organized by the strategic plan objectives. The IACC has also released a 

companion database to its portfolio analysis. However, IACC members provided 

mixed views on the usefulness of the IACC’s meetings, strategic plan, and 

portfolio analysis in aiding coordination and monitoring. While three agencies—

CDC, DOD, and NIH—regularly used the committee’s strategic plan and portfolio 

analysis, others did not. Shortcomings in the data the IACC used for its portfolio 

analysis limited its ability to coordinate HHS autism activities and monitor federal 

autism activities—as required by the Combating Autism Act of 2006 (CAA). For 

example, GAO found that the data used by the IACC was outdated, not tracked 

over time, inconsistent, and incomplete. These weaknesses limited the IACC’s 

ability to monitor its progress on its coordination and monitoring efforts—which, in 

prior work, GAO established as a best practice for inter-agency collaboration, as 

well as a federal internal control standard. In addition, these weaknesses limited 

agencies’ ability to use these data to identify coordination opportunities and avoid 

the potential for unnecessary duplication. Such information is important because 

of the involvement of multiple agencies. Lastly, apart from their participation on 

the IACC, there were limited instances of agencies coordinating, and agencies 

did not have robust or routine procedures for monitoring federal autism activities. 

Per federal internal control standards, agencies should establish a means of 

communicating with other agencies; this is important to maximize the efficiency 

of the federal autism investment and minimize the potential for unnecessary 

duplication.

View GAO-14-16. For more information, 

contact Marcia Crosse at (202) 512-7114 or 

crossem@gao.gov.
Page i GAO-14-16 Federal Autism Activities

Letter 1 

Background 6

The Majority of Federally-Funded Autism Research Was Potentially 

Duplicative, while Non-Research Activities Were Not 16

The IACC’s and Federal Agencies’ Efforts to Coordinate and 

Monitor Federal Autism Activities Were Limited 21

Conclusions 32

Recommendations 33

Agency Comments and Our Evaluation 33

Appendix I Methodology for Analyzing Potential Duplication of Federally 

Funded Autism Research and Other Activities 41

Appendix II List of Interagency Autism Coordinating Committee (IACC) 

Reports 46

Appendix III Federal Autism Research Projects by Interagency Autism 

Coordinating Committee Strategic Plan Objective 47

Appendix IV Agencies’ Non-Research Autism-Related Activities, Fiscal 

Years 2008 through 2011 60

Appendix V Comments from the Department of Defense 71

Appendix VI Comments from the Department of Education 73

Appendix VII Comments from the Department of Health and Human 

Services 75

Contents 
Page ii GAO-14-16 Federal Autism Activities

Appendix VIII Comments from the National Science Foundation 86

Appendix IX GAO Contact and Staff Acknowledgments 88

Table

Table 1: Number of Federal Agency Autism Research Projects and 

Funding by Interagency Autism Coordinating Committee 

Strategic Plan Objective, by Agency, Fiscal Years 2008 

through 2012 48

Figures

Figure 1: Federal Funds Awarded for Autism Research Projects, 

Fiscal Years 2008 through 2012 9

Figure 2: Federal Funds Awarded for Non-Research AutismRelated Activities, Fiscal Years 2008 through 2011 10

Figure 3: Interagency Autism Coordinating Committee (IACC) 

Strategic Plan Research Areas, July 2012 12

Figure 4: Number of Federal Agencies’ Autism Research Projects 

Funded, by Research Area, Fiscal Years 2008 through 2012 19
Page iii GAO-14-16 Federal Autism Activities

Abbreviations

ACF Administration for Children and Families

ACL Administration for Community Living

AHRQ Agency for Healthcare Research and Quality

CAA Combating Autism Act of 2006

CDC Centers for Disease Control and Prevention

CMS Centers for Medicare & Medicaid Services

DOD Department of Defense

EPA Environmental Protection Agency

HHS Department of Health and Human Services 

HRSA Health Resources and Services Administration

IACC Interagency Autism Coordinating Committee

LEND Leadership Education in Neurodevelopmental and Other 

 Related Disabilities

NIH National Institutes of Health

NSF National Science Foundation

OARC Office of Autism Research Coordination

RePORTER Research Portfolio Online Reporting Tools Expenditures 

 and Results

SAMHSA Substance Abuse and Mental Health Services 

 Administration

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Page 1 GAO-14-16 Federal Autism Activities

441 G St. N.W.

Washington, DC 20548

November 20, 2013

Congressional Requesters

Autism is an important public health concern, according to the Centers for 

Disease Control and Prevention (CDC)—an agency within the 

Department of Health and Human Services (HHS). CDC estimates 

suggest that the prevalence of autism is increasing, and that at least 1 in 

88 children in the United States have been identified as having autism.1

Autism is a complex developmental disorder that begins during early 

childhood, characterized by impaired social interactions, problems with 

verbal and nonverbal communication, and repetitive behaviors, or by 

severely limited activities and interests. What is commonly known as 

autism is a group of disorders known as autism spectrum disorder that 

can range from mild to more severe in their symptoms.2

 

1

CDC has recently reported 2 estimates of autism prevalence: 1 in 88 and 1 in 

50 children in the United States have been identified as having autism. According to CDC, 

there are several differences between the 2 studies used to determine the estimates that 

can contribute to the differing results, such as the population covered, method of data 

collection, and time periods covered. CDC reported its estimate of 1 in 88 in March 2012, 

which was based on reviews of health and education records of children 8 years of age 

residing in 14 select population-based sites in the United States during calendar year 

2008. The estimate of 1 in 50 was reported in March 2013 and was based on parent 

reports of a past diagnosis in a representative national sample of children 6 to 17 years of 

age in calendar years 2011 and 2012. CDC views the 2 data collection methods and 

estimates to be complementary. According to CDC, each provides unique supplemental 

information on the population of children with autism. Prior to these recent estimates, in 

2009, CDC reported an estimated prevalence of 1 in 110 children in the United States, 

which was based on data from calendar year 2006.

2

In this report, we use the term “autism” to refer to autism spectrum disorder as defined in 

the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders, which was 

effective during the time period covered by our review. American Psychiatric Association, 

Diagnostic and Statistical Manual of Mental Disorders, 4th Edition, Text Revision (DSMIV-TR) (Arlington, VA: American Psychiatric Association, 2000).

 
 

Page 2 GAO-14-16 Federal Autism Activities

From fiscal year 2008 through fiscal year 2012, 12 federal agencies 

funded autism research and other autism-related activities.3,4

To address growing concern about the increasing prevalence of autism 

and to stimulate research into possible autism causes and interventions, 

the Combating Autism Act of 2006 (CAA) was enacted in December of 

that year.

For 

example, agencies funded research to identify the causes of autism, as 

well as training for health care professionals on identifying and diagnosing 

autism. From fiscal year 2008 through fiscal year 2012, these agencies 

spent at least $1.4 billion on autism research and other autism-related 

activities.

5 The CAA reauthorized the Interagency Autism Coordinating

Committee (IACC), which is a federal advisory committee that was initially 

established under the Children’s Health Act of 2000.6 The CAA directs the 

IACC to coordinate all autism activities within HHS and to monitor federal 

activities related to autism. The IACC includes members representing 10 

federal agencies—8 agencies within HHS, the Department of Defense 

(DOD), and the Department of Education (Education). In addition, there 

are 14 nonfederal members who represent individuals with autism and 

parents of children with autism; as well as members of the autism 

advocacy, research, and service-provider communities.7

 

3

These agencies are the Department of Defense; Department of Education; 

Environmental Protection Agency; National Science Foundation; and eight agencies within 

HHS—Administration for Children and Families, Administration for Community Living, 

Agency for Healthcare Research and Quality, CDC, Centers for Medicare & Medicaid 

Services, Health Resources and Services Administration, National Institutes of Health, 

and Substance Abuse and Mental Health Services Administration.

The CAA also 

requires the IACC to develop and annually update a strategic plan for 

4

“Autism-related activities” include agency activities that are specific to autism as well as 

agency activities that are not autism-specific, but through which a project that was autismspecific or had an autism-specific component was funded.

5

Pub. L. No. 109-416, 120 Stat. 2821 (Dec. 19, 2006). These activities were reauthorized 

and funding was authorized to be appropriated through fiscal year 2014 under the 

Combating Autism Reauthorization Act of 2011. Pub. L. No. 112-32, 125 Stat. 361 

(Sept. 30, 2011). We previously reported on HHS agencies’ response to the CAA. See 

GAO, Combating Autism Act: HHS Agencies Responded with New and Continuing 

Activities, Including Oversight, GAO-13-232 (Washington, D.C. Feb. 27, 2013).

6

Pub. L. No. 106-310, § 104, 114 Stat. 1101, 1109 (Oct. 17, 2000).

7

IACC membership as of November 2013.
 

Page 3 GAO-14-16 Federal Autism Activities

autism research.8

Having multiple agencies involved in autism research and other autismrelated activities can be advantageous, as agencies may be able to tailor 

programs to suit their specific missions and needs. In some instances, 

funding similar research on the same topic is appropriate and necessary; 

for example, for purposes of replicating or corroborating prior research 

results. However, it is important that agencies monitor federal autism 

efforts and coordinate similar actions to maximize their effectiveness and 

efficiency and avoid the potential for unnecessary duplication. You asked 

us to provide information on the extent to which federal autism activities 

are duplicative and the extent to which federal autism activities are 

coordinated. In this report, we

The strategic plan is organized into 7 research areas 

that contain specific short- and long-term research objectives. The 

National Institutes of Health (NIH)—an agency within HHS—created the 

Office of Autism Research Coordination (OARC) to provide administrative 

support to the IACC. On behalf of the IACC, OARC periodically collects 

data from agencies on the autism research they fund and helps agencies 

categorize this research to the specific strategic plan objectives.

1. analyze the extent to which federal agencies fund potentially 

duplicative autism research and other autism-related activities, and

2. assess the extent to which the IACC and agencies coordinate and 

monitor federal autism activities.

To analyze the extent to which federal agencies fund potentially 

duplicative autism research and other autism-related activities, we first 

identified the agencies funding such research and activities and collected 

data on the nature of the research or activities and the associated funding 

amounts. Specifically, we identified those federal agencies that funded 

autism research projects and autism-related activities from fiscal years 

2008 to 2011 through interviews, review of related documentation, and 

database searches. We considered a federal agency to have funded 

autism research or an autism-related activity if the research project or 

activity was autism-specific or had an autism-specific component, and 

 

8

The CAA also requires the IACC to develop and annually update a summary of advances 

in autism research; and to make recommendations to the Secretary of Health and Human 

Services regarding any appropriate changes to federal autism activities, including 

recommendations with respect to the strategic plan on autism research and 

recommendations regarding public participation in decisions relating to autism.
 

Page 4 GAO-14-16 Federal Autism Activities

was supported by federal funds awarded under mechanisms such as 

grants, cooperative agreements, or contracts; or was research conducted 

by scientists in government laboratories, known as intramural research.9

We compared the agency data we collected to information collected by 

OARC on behalf of the IACC. We also included any agencies and the 

related research projects they funded in fiscal year 2012, as identified in 

data that agencies submitted to OARC.

10

Next, to determine potential duplication in autism research, we identified 

research projects that were categorized to the same strategic plan 

objectives. For those projects that were not categorized to a specific 

objective, but were categorized to one of the seven research areas, we 

assessed duplication based on whether they were categorized to the 

same research area. Determining that projects were categorized to the 

same strategic plan objective or research area suggests potential, but not 

actual duplication. Determining actual duplication for research projects 

would require a more extensive review of voluminous and scientific data, 

and was beyond the scope of this study.

Finally, we assessed whether there was actual duplication of nonresearch autism-related activities using the framework we established in 

our previous work. This framework considers duplication to have occurred 

when two or more agencies fund the same activities that target the same 

 

9

A cooperative agreement is an alternative assistance instrument used instead of a grant 

whenever substantial federal involvement with the recipient during performance is 

anticipated. 

10We initially collected data directly from the individual federal agencies regarding the 

autism research and autism-related activities that were awarded funds from fiscal years 

2008 to 2011. While our work was in progress, in January 2013, we learned that OARC, 

on behalf of the IACC, had started collecting data on research projects funded by federal 

agencies in fiscal years 2011 and 2012. We opted to include the fiscal year 2012 research 

projects that agencies reported to OARC. We relied on the agency data we collected on 

the non-research activities awarded between fiscal years 2008 and 2011. Also, DOD’s 

fiscal year 2012 appropriation for its medical research programs, including autism, was 

available for obligation through the end of fiscal year 2013—September 30, 2013. At the 

time of our review, DOD had not submitted data on its fiscal year 2012 research projects 

in response to OARC’s request. As a result, our report does not include data on DOD’s 

fiscal year 2012 autism research. 
 

Page 5 GAO-14-16 Federal Autism Activities

users.11

To assess the extent to which the IACC and agencies coordinate and 

monitor federal autism activities, we reviewed IACC documents, including 

the strategic plan. We also interviewed OARC officials and officials from 

10 federal agencies. Eight of these agencies were IACC members. The 

other 2 agencies were not IACC members, but funded autism-related 

research between fiscal years 2008 and 2012. We also interviewed select 

nonfederal IACC members.

To determine if the activities and targeted users were the same, 

we reviewed each activity’s purpose and strategy for achieving that 

purpose and reviewed the targeted population of the activities. We 

assessed the reliability of the data we obtained by comparing agency 

data to data collected by OARC, following up with agency officials 

regarding discrepancies in the data, and gathering information from 

agencies on the internal controls they use when maintaining their data. 

We found the data reliable for our purposes. For more information on our 

scope and methodology for determining whether federal agencies fund 

potentially duplicative autism research and other autism-related activities, 

see appendix I.

12

 

11See for example, GAO, 2013 Annual Report: Actions Needed to Reduce Fragmentation, 

Overlap, and Duplication and Achieve Other Financial Benefits, 

Our review of documents and interviews 

allowed us to determine the methods used by the IACC to coordinate 

HHS activities and monitor federal autism activities. It also allowed us to 

determine how agencies coordinate and monitor federal autism activities 

apart from the IACC to prevent unnecessary duplication. We assessed 

the IACC’s and agencies’ coordination and monitoring activities against 

criteria established by our prior work, including key practices for 

interagency coordination and collaboration, and federal internal control 

standards related to communicating with external entities, including other 

GAO-13-279SP

(Washington, D.C.: Apr. 9, 2013) and GAO, 2012 Annual Report: Opportunities to Reduce 

Duplication, Overlap, and Fragmentation, Achieve Savings, and Enhance Revenue,

GAO-12-342SP (Washington, D.C.: Feb. 28, 2012).

12We interviewed eight federal members of the IACC. We did not interview officials from 

two agencies that are members of the IACC—the Administration for Children and Families 

(ACF) and the Food and Drug Administration. ACF awarded funds for one autism-related 

research project in fiscal year 2012. The Food and Drug Administration did not fund any 

autism research or autism-related activities during the time frame of our review. We also 

did not interview Substance Abuse and Mental Health Services Administration (SAMHSA) 

officials. SAMHSA is not a member of the IACC, but awarded funds for one autism-related 

research project in fiscal year 2011. We selected six nonfederal members to interview; 

however, in July 2013, one of the nonfederal members we interviewed stepped down from 

the IACC.
 

Page 6 GAO-14-16 Federal Autism Activities

agencies, and measuring progress on organizational efforts, such as 

those established through strategic plans.13

We conducted this performance audit from December 2012 to November 

2013 in accordance with generally accepted government auditing 

standards. Those standards require that we plan and perform the audit to 

obtain sufficient, appropriate evidence to provide a reasonable basis for 

our findings based on our audit objectives. We believe that the evidence 

obtained provides a reasonable basis for our findings and conclusions 

based on our audit objectives. 

Autism—a complex and pervasive developmental disability—begins 

during early childhood, although signs and symptoms vary.14 According to 

CDC, autism begins before age 3 and lasts throughout a person’s life. 

Some children show signs of autism within the first few months of life. In 

others, symptoms might not be apparent until 24 months or later. Still 

other children with autism seem to develop typically until 18 to 24 months 

of age and then stop gaining new skills or lose the skills they had. Signs 

and symptoms of autism include a child not responding to his or her name 

by 12 months; not pointing at objects to show interest by 14 months; 

avoiding eye contact and wanting to be alone; repeating words or phrases 

over and over; and flapping hands, rocking, or spinning in circles. 

Individuals with autism might have problems with showing or talking about 

their feelings and might also have trouble understanding the feelings of 

others.

 

13See, for example, GAO, Managing for Results: Key Considerations for Implementing 

Interagency Collaborative Mechanisms, GAO-12-1022 (Washington, D.C.: Sept. 27, 

2012); GAO, Results-Oriented Government: Practices That Can Help Enhance and 

Sustain Collaboration among Federal Agencies, GAO-06-15 (Washington, D.C.: Oct. 21, 

2005); and GAO, Standards for Internal Control in the Federal Government, 

GAO/AIMD-00-21.3.1 (Washington, D.C.: November 1999). 

14A developmental disability is a chronic condition caused by mental impairment, physical 

impairment, or both that begins any time during prenatal development up to age 22 and 

usually persists throughout a person’s life. Individuals with developmental disabilities have 

substantial functional limitations in at least 3 major life activities such as language, 

mobility, learning, self-help, and independent living. Developmental disabilities may 

include cerebral palsy, hearing loss, intellectual disability, and impaired vision.

Background 
 

Page 7 GAO-14-16 Federal Autism Activities

Diagnosing autism can be difficult, as there is no medical diagnostic test 

available. As a result, doctors consider a child’s behavior and 

development to make a clinical diagnosis. By age 2, a diagnosis by an 

experienced professional can be considered very reliable. However, 

according to CDC, most children do not receive a diagnosis until after 

age 4. There is no single known cause of autism, but a variety of factors 

are suspected of causing or contributing to autism, including 

environmental, biological, and genetic factors. While there is no known 

cure, research shows that early intervention treatment services can 

greatly improve a child’s development. Because of the complexity of this 

disorder, individuals with autism have diverse needs for medical and 

mental health care, as well as an array of educational and social services.

To address growing concern about the increasing prevalence of autism 

and to stimulate research into possible autism causes and interventions, 

the CAA was enacted in December 2006. The CAA amended sections of 

the Children’s Health Act of 2000—which required HHS to conduct 

activities related to autism research, surveillance, and coordination—and 

authorized the expansion of HHS’s autism activities and funding for such 

activities through fiscal year 2011. The Combating Autism 

Reauthorization Act of 2011 reauthorized these activities and authorized 

funding through fiscal year 2014.

In 2008, NIH created OARC to provide administrative support to the 

IACC. OARC assists the IACC in fulfilling the IACC’s responsibilities 

established by the CAA. Among other things, it conducts analyses and 

prepares reports for the IACC; assists with the IACC’s strategic planning 

and monitoring of autism activities; coordinates cross-agency efforts; 

gathers public input to inform the work of the IACC; disseminates 

information about the work of the IACC and autism research activities to 

the public, Congress, and other government agencies; and provides 

logistical support for IACC meetings. In addition to assisting the IACC, 

OARC produced a report to Congress on federal autism activities on 
 

Page 8 GAO-14-16 Federal Autism Activities

behalf of the Secretary of Health and Human Services, as required by the 

CAA.15

The 12 federal agencies that funded autism research and other autismrelated activities between fiscal years 2008 and 2012 were DOD; 

Education; the Environmental Protection Agency (EPA); the National 

Science Foundation (NSF); and 8 agencies within HHS—Administration 

for Children and Families (ACF), Administration for Community Living 

(ACL), Agency for Healthcare Research and Quality (AHRQ), CDC, 

Centers for Medicare & Medicaid Services (CMS), Health Resources and 

Services Administration (HRSA), NIH, and Substance Abuse and Mental 

Health Services Administration (SAMHSA). With the exception of EPA, 

NSF, and SAMHSA, these agencies have representatives on the IACC.16

Eleven of these 12 agencies awarded approximately $1.2 billion to fund 

autism research projects from fiscal years 2008 through 2012, as shown 

in figure 1.17

 

15See HHS, OARC, NIH, Report to Congress on Activities Related to Autism Spectrum 

Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 

(FY 2006 – FY 2009) (Rockville, Md.: December 2010, revised April 2011). According to 

OARC officials, OARC will be preparing another report to Congress on autism activities as 

required by the reauthorization of the CAA. This report is expected to be submitted to 

Congress by the Secretary of Health and Human Services and then released to the public 

in the fall of 2013.

NIH was the biggest supporter of autism research, awarding 

approximately 81 percent of the funding from fiscal years 2008 through 

2012.

16AHRQ and DOD were not members of the IACC when the CAA was enacted in 2006, 

but have joined since the act’s reauthorization in 2011. ACL was created in 2012. Prior to 

this, the component of ACL that funded an autism activity was part of ACF and a previous 

IACC member. SAMHSA was also a previous IACC member.

17ACL did not fund autism research from fiscal year 2008 through fiscal year 2012; ACL 

funded one non-research autism-related activity during this time period.
 

Page 9 GAO-14-16 Federal Autism Activities

Figure 1: Federal Funds Awarded for Autism Research Projects, Fiscal Years 2008 

through 2012

a

Other agencies are Administration for Children and Families (1 project), Agency for Healthcare 

Research and Quality (5 projects), Centers for Medicare & Medicaid Services (4 projects), 

Environmental Protection Agency (1 project), and Substance Abuse and Mental Health Services 

(1 project).

b

In addition, of the 12 agencies, 5 awarded approximately $204 million for 

non-research autism-related activities from fiscal years 2008 through 

2011, as shown in figure 2.

DOD’s fiscal year 2012 appropriation for its medical research programs, including autism, was 

available for obligation through the end of fiscal year 2013—September 30, 2013. At the time of our 

review, DOD had not submitted data on its fiscal year 2012 research projects in response to the 

Office of Autism Research Coordination’s request. As a result, the funding amount for DOD does not 

include DOD’s funding for fiscal year 2012 autism research.
 

Page 10 GAO-14-16 Federal Autism Activities

Figure 2: Federal Funds Awarded for Non-Research Autism-Related Activities, 

Fiscal Years 2008 through 2011

Notes: Most of Education’s activities included projects that were not related to autism. The funding 

presented for Education represents the funding amounts that supported projects that were autismspecific or had a component to them that was autism-specific.

With the exception of CDC, funding in this figure is based on the amount awarded to fund projects 

under the agencies’ activities from fiscal year 2008 through fiscal year 2011. CDC funded one nonresearch activity—an awareness campaign—from fiscal years 2008 through 2011 that was focused 

on autism and other developmental disabilities. The funding amount for CDC in this figure represents 

all funding for the activity, such as awards and activities conducted internally at the agency, with the 

exception of research—totaling approximately $1.7 million.

After ACL was created in 2012, management of one autism-related activity was moved from 

Administration for Children and Families to ACL. Because ACL currently manages the activity, it is 

attributed to ACL in the figure.

Most of the autism research funded by the agencies is conducted by 

scientists at external research organizations—known as extramural 

research—and funded through mechanisms including grants, contracts, 

and cooperative agreements. To apply for research funding, an institution 
 

Page 11 GAO-14-16 Federal Autism Activities

submits an application on behalf of a principal investigator—the individual 

who is responsible and accountable for conducting the research—in 

response to an agency’s funding opportunity announcement.18 Some 

announcements are targeted to autism, while others are general funding 

opportunity announcements that may cover a number of topics, including 

autism, such as announcements soliciting biomedical research. Lastly, 

some agencies allow the submission of “unsolicited” or “investigatorinitiated” applications.19

Since the passage of the CAA in 2006, the IACC has issued several 

reports as a means to coordinate HHS autism activities and monitor 

federal autism activities, some of which were specifically required by the 

act, such as the strategic plan.

Agencies may also fund intramural research 

related to autism.

20 The IACC published its first strategic 

plan in 2009. The most recent strategic plan was organized into seven 

questions that correspond to seven research areas. For example, the first 

question in the strategic plan—“When should I be concerned?”—

corresponds to research related to the diagnosis of autism. Each 

research area contains specific short- and long-term research 

objectives.21

 

18Principal investigators are typically individuals designated by the applicant organization, 

such as a university, to have the appropriate level of authority and responsibility to direct 

the project or program to be supported by the award. A funding opportunity announcement 

is a publicly available document in which a federal agency makes known its intentions to 

award discretionary grants or cooperative agreements, usually as a result of competition 

for funds. Funding opportunity announcements may be known as program 

announcements, requests for applications, notices of funding availability, solicitations, or 

other names depending on the agency and type of program. A request for proposal is a 

type of mechanism used to solicit proposals for a contract.

Over the years, more have been added, for a total of 

19NIH and other HHS agencies have developed omnibus parent announcements for use 

by investigators who wish to submit investigator-initiated research.

20Another such required report is a summary of advances in autism research, which 

annually lists and summarizes the findings of autism research publications that the IACC 

deems to have significantly advanced the field.

21Six research areas have separate short- and long-term objectives. For one research 

area—infrastructure and surveillance—the IACC considers all objectives within that area 

to be both short- and long-term objectives.
 

Page 12 GAO-14-16 Federal Autism Activities

78 objectives in the most recent plan.22

Figure 3: Interagency Autism Coordinating Committee (IACC) Strategic Plan Research Areas, July 2012

Figure 3 outlines the research 

areas and number of objectives.

Note: According to the IACC, the “topics covered” do not necessarily encompass all projects funded 

in each research area.

a

 

22The 2009 strategic plan contained 6 questions and 40 objectives. The question—“What 

other infrastructure and surveillance needs must be met?”—as well as additional 

objectives were added to the 2010 strategic plan. During the IACC’s most recent update of 

the strategic plan—the 2012 update—the IACC did not review or change the number of 

objectives, but instead summarized the new advances and opportunities in the field under 

each of the 7 research areas. Therefore, the most recent plan that contains the research 

areas and objectives is the 2011 strategic plan.

The IACC considers the 16 objectives for the research area, infrastructure and surveillance, to be 

both short- and long-term objectives.
 

Page 13 GAO-14-16 Federal Autism Activities

The IACC also produces an annual Autism Spectrum Disorder Research 

Portfolio Analysis Report, which is organized by the seven research areas 

of the strategic plan. It includes information on research projects funded 

by federal and nonfederal entities related to autism, including budget 

information, for a single fiscal year.23 The portfolio analysis also 

categorizes the research projects to the specific objectives in the strategic 

plan; and indicates if an objective has been fulfilled based on the funding 

of projects related to that objective in a given year.24

In July 2012, the IACC released a companion database to its portfolio 

analysis, referred to as the “IACC/OARC portfolio analysis web tool” (web 

tool).

In order to prepare 

the portfolio analysis, OARC collects data from federal and nonfederal 

entities on the autism-related research projects they funded in a certain 

fiscal year. OARC works with these entities to categorize each project 

according to the research areas and objectives in the strategic plan. See 

appendix II for a description of the reports produced by the IACC.

25

 

23The first portfolio analysis—the 2008 portfolio analysis—which contains information on 

research funded in 2008, was published in April 2010. The 2009 portfolio analysis was 

published in June 2011. The most recent portfolio analysis—the 2010 portfolio analysis—

was published in July 2012.

The web tool contains information on the specific research 

projects included in the 2008, 2009, and 2010 portfolio analysis reports. 

For each project in a given fiscal year (i.e., 2008, 2009, or 2010), the web 

tool displays information, such as funding agency, principal investigator, 

funded amount, institution, project description, as well as the strategic 

plan research area and objective associated with the project. For 

example, users can sort projects by research area—such as diagnosis—

and see all projects included in a particular year’s portfolio analysis 

related to that research area.

24We consider reports and other information that are prepared by OARC, on behalf of the 

IACC, to be IACC information.

25The web tool, accessed August 27, 2013, is available at https://iacc.hhs.gov/apps/ 

portfolio-analysis-web-tool/projects. 
 

Page 14 GAO-14-16 Federal Autism Activities

The CAA requires the IACC to meet twice annually, and it has met, on 

average, five times a year since 2008.26

For several years, we have reported on the need for the federal 

government to strive for greater efficiency and effectiveness by 

eliminating duplication.

These meetings often include 

presentations from experts about specific topics related to recent autism 

research and service activities, federal agency updates, as well as time to 

discuss general IACC business, such as how committee members want 

to move forward with specific tasks, including updating the strategic plan. 

The meetings also include time for public comments. The IACC 

subcommittees meet more frequently to further discuss activities and 

carry out related tasks.

27

Grants.gov

This is particularity critical when multiple 

agencies are involved in the same programmatic or policy area, as is the 

case with autism research and other autism-related activities. Without 

effective monitoring and sharing of information among federal agencies 

about planned or funded autism research or other autism-related 

activities, agencies may use available funds inefficiently due to 

duplication of effort. Monitoring such research can be done by searching 

databases, such as and Clinicaltrials.gov, which contain 

information on federally funded grant programs and clinical research 

studies, respectively.28

 

26For our analysis, we determined the average number of IACC full committee meetings 

from calendar years 2008 through 2012. In addition to these meetings, the IACC 

subcommittees have met, and the IACC has held town hall gatherings, scientific 

workshops, and planning workgroup meetings. There are two IACC subcommittees. The 

subcommittee for basic and translational research supports IACC activities related to 

biomedical and behavioral research, research collaborations and resources, and other 

related issues. The subcommittee for services research and policy supports IACC 

activities related to service research and service policy, including service provision, 

service research, access, housing, transition, social inclusion, health disparities, 

healthcare costs, the Patient Protection and Affordable Care Act, and safety issues. 

Also, some agencies have databases that contain 

information on the grants and activities they have funded, which are 

27See, for example, GAO-13-279SP and GAO-12-342SP. 

28Grants.gov serves as the central grant identification and application portal for more than

1,000 federal grant programs that fund approximately $500 billion in grants from 26 grantmaking agencies for activities such as training, research, planning, construction; and the 

provision of services in areas such as health care, education, transportation, and 

homeland security. See http://www.grants.gov, accessed August 26, 2013. 

ClinicalTrials.gov is a resource for information about clinical research studies, also 

referred to as clinical trials. It includes information on federally funded and non-federally 

funded studies. See http://www.clinicaltrials.gov, accessed August 26, 2013.
 

Page 15 GAO-14-16 Federal Autism Activities

available to the public. For example, NIH’s Research Portfolio Online 

Reporting Tools Expenditures and Results (RePORTER) database 

includes information on the expenditures and results of NIH funded 

research, including autism research.

In addition, we have reported on the importance of coordination between 

federal agencies for many years. We have noted that strategic plans can 

be effective tools to drive agency collaboration and establish 

complementary goals and strategies for achieving results.29 Such plans 

can reinforce accountability for the collaboration by aligning agency goals 

and strategies with those of the collaborative efforts. In our prior work we 

have also established that measuring and reporting progress on 

collaborative efforts—such as through the use of short- and long-term 

strategic objectives—is a best practice for interagency collaboration, as 

well as an important internal control standard for the federal 

government.30

 

29See, for example, GAO-12-1022 and GAO, Managing for Results: Critical Issues for 

Improving Federal Agencies’ Strategic Plans, GAO/GGD-97-180 (Washington, D.C.: 

Sept. 16, 1997).

30GAO-06-15 and GAO/AIMD-00-21.3.1.
 

Page 16 GAO-14-16 Federal Autism Activities

We found that most of the autism research projects had the potential to 

be duplicative. The non-research projects did not.

Of the 1,206 research projects funded by federal agencies from fiscal 

years 2008 through 2012, 84 percent—or 1,018 projects—had the 

potential to be duplicative.31

 

31We found that 84 percent of projects were potentially duplicative by identifying the 

number of projects that were categorized to the same strategic plan objective and funded 

by different agencies. For those projects that were not categorized to a specific objective, 

but were categorized to one of the 7 research areas, we identified the number of projects 

that were categorized to the same research area and funded by different agencies. We 

summed the projects identified and compared the results to the total number of research 

projects funded during the time period of our review. Our findings suggest the potential for,

but not actual, duplication. We could not assess 31 projects for duplication. NIH 

categorized 6 of its research projects as not relating to any of the research areas. 

Additionally, 16 research projects were not included in IACC data. Furthermore, from fiscal 

years 2008 through 2011, CDC awarded funds for 9 research projects on autism and 

other developmental disabilities as part of its non-research autism-related activity, Learn 

the Signs. Act Early. CDC categorized the entire activity to the services research area; 

however, we did not categorize these 9 research projects to the same objective because it 

was unclear if the individual research projects under Learn the Signs. Act Early. would 

also be categorized to the services research area.

We found that each of the 11 agencies that 

funded autism research during this period funded at least 1 autism 

research project in the same strategic plan objective as another agency, 

creating the potential for duplication. Additionally, some objectives were 

funded by multiple agencies. For example, NIH—which funded the 

majority of autism research projects—funded projects in the same 

strategic plan objective as most of the other agencies. In many instances, 

3 or more agencies funded research projects under the same objective. 

For example, 5 agencies—AHRQ, DOD, Education, HRSA, and NIH—

awarded approximately $15.2 million for 20 autism research projects 

related to 1 objective. This objective was to test methods to improve 

dissemination, implementation, and sustainability of evidence-based 

interventions, services, and supports in diverse community settings. Four 

The Majority of 

Federally-Funded 

Autism Research Was 

Potentially 

Duplicative, while 

Non-Research 

Activities Were Not

Most of the Autism 

Research Funded Was 

Potentially Duplicative
 

Page 17 GAO-14-16 Federal Autism Activities

agencies—DOD, Education, HRSA, and NIH—awarded approximately 

$4.1 million for eight autism research projects to develop at least two 

individualized community-based interventions to improve quality-of-life or 

health outcomes for the spectrum of adults with autism. See appendix III 

for the number of agency research projects and funding amounts for each 

strategic plan objective. In addition, many research projects, while not 

categorized to a specific strategic plan objective, were related to the 

same research area; and, therefore, may be potentially duplicative. For 

example, 3 agencies—DOD, NIH, and NSF—awarded approximately 

$173.0 million for 264 projects in the biology research area, but these 

projects were not related to a specific objective.32

In addition to identifying potential duplication among the federally-funded 

autism research projects, we obtained additional data from HRSA, AHRQ, 

and Education that allowed us to identify actual duplication in 4 of the 

research projects funded by these agencies.33 HRSA and AHRQ both 

funded systematic reviews of scientific papers looking at examining 

effective interventions for children and adolescents with autism.34

 

32According to OARC officials, the strategic plan objectives represent gap areas that need 

additional attention or emphasis, and are not meant to cover all areas of autism research; 

therefore, research projects that are categorized to a research area, but not a specific 

objective, focus on research outside of the specific gap areas represented in the strategic 

plan.

According to HRSA officials, 1 of the agency’s grantees was charged with 

developing guidelines on effective autism interventions for children and 

adolescents. During this process, they examined 101 scientific papers. 

AHRQ officials contacted HRSA, and although HRSA’s project was 

underway, AHRQ decided to fund 2 research projects: 1 project reviewing 

evidence from 183 papers on interventions for children, and 1 project 

reviewing evidence from 32 papers on interventions for adolescents and 

young adults. Thirty-one of these papers were reviewed by both HRSA’s 

and AHRQ’s grantees. Although HRSA’s project led to the development 

of guidelines for interventions on behavioral health of children and 

33During the course of our review, we learned that HRSA, AHRQ, and Education funded 

reviews of evidence regarding the effectiveness of autism interventions for children and 

adolescents. Using the framework established in our previous work on duplication, we 

obtained additional data from these agencies that allowed us to determine if there was 

duplication by comparing the projects’ purposes, strategies, and target populations.

34A systematic review is a critical assessment and evaluation of all research studies that 

address a particular clinical issue.
 

Page 18 GAO-14-16 Federal Autism Activities

adolescents with autism while AHRQ’s projects did not, the projects 

evaluated many of the same studies for the same population. In addition 

to the HRSA and AHRQ projects, Education funded a project examining 

an intervention model of applied behavior analysis for children with 

disabilities, including autism. The 2 studies included in Education’s project 

were also included in 1 of the AHRQ projects.35

Most agency officials we spoke with said that they consider the research 

funded by their agencies to be different than autism research funded by 

other agencies; however, we found that at least 4 agencies funded autism 

research in the same research area. The most commonly funded projects 

were in the area of biology (423 projects), followed by treatment and 

interventions (253 projects), and causes (159 projects). NIH funded a 

majority of the autism research projects in 5 of the 7 research areas. See 

figure 4 for the agencies that funded autism research projects by research 

area.

 

35Education’s project published a report of its findings in 2010, and the AHRQ project 

published its report in 2011.
 

Page 19 GAO-14-16 Federal Autism Activities

Figure 4: Number of Federal Agencies’ Autism Research Projects Funded, by Research Area, Fiscal Years 2008 through 2012

Notes: From fiscal years 2008 through 2012, 6 autism projects were included in IACC data, but were 

categorized as “not specific to any research area,” and 16 projects were not included in IACC data 

and, therefore, not categorized to the research areas. Furthermore, from fiscal years 2008 through 

2011, CDC awarded funds for 9 research projects on autism and other developmental disabilities as 

part of its non-research autism-related activity, Learn the Signs. Act Early. CDC categorized the entire 

activity to the services research area; however, these 9 research projects are not included in the 

figure because it was unclear if the individual research projects under Learn the Signs. Act Early. 

would also be categorized to the services research area. DOD’s research projects include projects 

funded from DOD’s fiscal years 2008 through 2011 appropriations. DOD’s fiscal year 2012 

appropriation for its medical research programs, including autism, was available for obligation through 

the end of fiscal year 2013—September 30, 2013. At the time of our review, DOD had not submitted 

data on its fiscal year 2012 research projects in response to the Office of Autism Research 

Coordination’s request. As a result, the number of autism research projects for DOD does not include 

DOD’s projects for fiscal year 2012.

The agencies included as “other agencies” in each research area are: Administration for Children and 

Families, Agency for Healthcare Research and Quality (AHRQ), and Substance Abuse and Mental 

Health Services Administration in diagnosis; Environmental Protection Agency in causes; AHRQ in 

treatments and interventions; AHRQ and Centers for Medicare & Medicaid Services (CMS) in 

services; AHRQ in lifespan issues; and CMS in infrastructure and surveillance.
 

Page 20 GAO-14-16 Federal Autism Activities

The five agencies that funded non-research autism-related activities from 

fiscal years 2008 through 2011—ACL, CDC, DOD, Education, and 

HRSA—funded activities that were not duplicative.

HRSA and Education both funded training activities related to autism, but 

we determined that these activities were not duplicative. Among other 

things, HRSA’s training activities train health care professionals, such as 

pediatric practitioners, residents, and graduate students, to provide 

evidence-based services to children with autism and other developmental 

disabilities and their families; and train specialists to provide 

comprehensive diagnostic evaluations to address the shortage of 

professionals who can confirm or rule out an autism diagnosis. 

Education’s training activities focus on the education setting; for example, 

to prepare personnel in special education, related services, early 

intervention, and regular education to work with children with disabilities, 

including autism.

Additionally, DOD and ACL both funded a publicly available website to 

provide information on services available to individuals with autism. 

However, we determined that these websites were not duplicative. DOD’s 

website was developed for military families to provide them with 

information on the educational services that are close to specific military 

installations in select states. The ACL website is broader than the DOD 

website, focusing on individuals with autism and other developmental 

disabilities, their families, and other targeted key stakeholders concerned 

with autism.

We determined that CDC is the only agency funding an awareness 

campaign on autism and other developmental disabilities. CDC’s Learn 

the Signs. Act Early. campaign promotes awareness of healthy 

developmental milestones in early childhood, the importance of tracking 

each child’s development, and the importance of acting early if there are 

concerns.36

 

36Although CDC’s Learn the Signs. Act Early. campaign is generally a non-research 

autism-related activity, one institution received funding from CDC through this campaign to 

conduct research on autism and other developmental disabilities. We included the funds 

awarded to this institution for research as research in our analysis.

This activity also includes an initiative that works with state, 

territorial, and national partners to improve early childhood systems by 

enhancing collaborative efforts to improve screening and referral to early 

Non-Research AutismRelated Activities Were 

Not Duplicative
 

Page 21 GAO-14-16 Federal Autism Activities

intervention services; and to promote Learn the Signs. Act Early. 

messages and tools and improve early identification efforts in their state.

See appendix IV for a list of non-research autism-related activities, as 

well as the purpose, strategy, and target populations of those activities.

We found that the IACC members’ views regarding the committee’s 

efforts to coordinate HHS autism activities and monitor federal autism 

activities were mixed; and the IACC’s efforts to coordinate HHS autism 

activities and monitor federal autism activities were limited by the data the 

IACC uses. Further, agencies’ own efforts to coordinate and monitor 

autism activities were limited.

Members of the IACC provided mixed views on the usefulness of the 

IACC’s efforts to coordinate HHS autism activities and monitor federal

autism activities through its meetings and select documents. Many of the 

IACC members we spoke with said the IACC meetings aided coordination 

and monitoring. Specifically, five of the eight federal members—ACL, 

CDC, CMS, HRSA, and NIH—as well as two of the six nonfederal 

members we spoke with, stated that the IACC meetings aided 

coordination and monitoring among HHS and other federal IACC 

members by providing an opportunity for agencies to learn about others’ 

activities and investments. However, five federal IACC members—AHRQ, 

CMS, DOD, Education, and HRSA—and one nonfederal member also 

stated that the information shared during the meetings is typically at a 

high level and the structure of the meetings provides little opportunity to 

discuss detailed information. Therefore, it would be difficult to prevent 

duplication of autism activities through the meetings alone. Education and 

CMS officials commented that more information sharing would be helpful. 

A CMS official stated that it would be beneficial for federal agencies to 

discuss autism activities they are considering funding. However, an 

Education official stated that while this type of exchange would be 

beneficial, the official cautioned about the type of information that could 

be shared in a public setting, such as an IACC meeting. For example, the 

official stated that providing information to the public on the focus and 

requirements of a funding opportunity announcement before it is officially 

released could provide some parties with a competitive advantage and 

could violate federal regulations. HRSA officials stated that, while specific 

projects are not usually discussed at meetings, the high-level information 

The IACC’s and 

Federal Agencies’ 

Efforts to Coordinate 

and Monitor Federal 

Autism Activities 

Were Limited

Members’ Views on IACC 

Coordination and 

Monitoring Efforts were 

Mixed
 

Page 22 GAO-14-16 Federal Autism Activities

shared during meetings is useful; if they need more information they 

would contact the agency directly. For example, HRSA officials told us 

that, in one instance, officials from DOD contacted HRSA after hearing 

about HRSA’s autism activities during an IACC meeting. In addition, 

following an IACC meeting, officials from NIH, CDC, and a nonfederal 

IACC member organization came together to fund a research project to 

investigate reports of elevated prevalence of autism among Somali 

American children in Minneapolis, Minn.

Officials from three agencies—CDC, DOD, and NIH—told us that they 

use the strategic plan and portfolio analysis—which are key documents 

used by the IACC to coordinate and monitor federal autism activities—

when setting priorities for their autism programs and to learn of autism 

activities conducted by other agencies. For example, NIH officials stated 

that the specific objectives in the strategic plan allowed them to quickly 

develop announcements for new projects in fiscal years 2009 and 2010, 

for which the agency was appropriated additional funds under the 

American Recovery and Reinvestment Act of 2009. In addition, within 

DOD, the Office of Congressionally Directed Medical Research Programs’ 

Autism Research Program Integration Panel—an advisory group that 

reviews autism research applications submitted to DOD—used 

information from the IACC’s strategic plan and portfolio analysis, as well 

as other sources of information, when determining its autism research 

priorities.37

In contrast, officials from three agencies that are members of the IACC, 

and two agencies that are not IACC members, but fund autism research, 

 

37The Autism Research Program Integration Panel is comprised of experts and leaders in 

the field, including doctors, scientists, and consumers. It recommends the office’s autism 

research priorities and recommends projects to be funded annually.
 

Page 23 GAO-14-16 Federal Autism Activities

told us that they do not regularly use these IACC documents.38 Some of 

the agencies stated that the type of research they fund is different from 

the type of research identified in the strategic plan. For example, although 

we found that NSF has funded projects related to autism, officials from 

NSF—which is not a member of the IACC—said that the agency does not 

specifically solicit autism research, so they do not consider the strategic 

plan when selecting research proposals. Education officials also stated 

that the type of autism-related research the agency funds involves the 

development and testing of interventions to improve developmental and 

educational outcomes, which do not fit with the strategic plan objectives. 

However, we found that the strategic plan did include a research area 

focused on interventions, as well as one related to lifespan issues—two 

areas that could encompass the type of autism-related research funded 

by Education.39

We also found that the IACC may have missed opportunities to 

coordinate federal autism activities and reduce duplication of effort and 

resources. Although the CAA requires the IACC to coordinate HHS 

autism activities and monitor federal autism activities, OARC officials told 

us that the prevention of duplication among individual projects in agency 

portfolios is not specified in the CAA as one of the IACC’s statutory 

responsibilities, and therefore, is not a focus of the IACC. OARC officials 

Education officials also stated that, because the agency

provides broad guidance for research applications, much of Education’s 

research is investigator-initiated; therefore, the agency would not be able 

to direct much research toward the objectives in the strategic plan.

 

38We asked agency officials about the extent to which they used the strategic plan and 

portfolio analysis. The agencies that do not regularly use these documents are ACL, 

AHRQ, Education, EPA, and NSF. While AHRQ does not regularly use these documents, 

AHRQ officials stated that they consulted the IACC when developing their systematic 

reviews related to autism. Additionally, CMS officials stated that while they do not use the 

portfolio analysis, the autism research projects they funded resulted from strategic plan 

objectives, among other things, such as the general rise of autism and CMS’s own 

initiative and interest in providing information to the professionals who work with CMS. In 

addition, HRSA officials stated they used the strategic plan when first creating their autism 

activities and on an ongoing basis. Officials stated that they included language in their 

autism funding opportunity announcements about their interest in intervention research,

underserved populations, and other broad areas noted as gaps in the strategic plan; 

however, HRSA officials made no mention of using the portfolio analysis.

39In its comments on a draft of this report, Education stated that after holding a meeting 

with OARC officials in August 2013, it determined that its research related to interventions 

could be categorized to the strategic plan; subsequently, it has categorized those projects 

accordingly.
 

Page 24 GAO-14-16 Federal Autism Activities

explained that it is up to individual federal agencies to use the information 

contained in the IACC’s strategic plan and portfolio analysis and the 

related web tool to prevent duplication. OARC officials acknowledged that 

the IACC could choose to use the portfolio analysis to make 

recommendations for increased interagency coordination, but to date this 

has not occurred. In terms of the role of OARC, OARC officials said they 

do not review the data that they collect on behalf of the IACC for 

duplication or for coordination opportunities. Instead, they said that they 

fulfill their role in assisting the IACC in its cross-agency coordination 

activities in other ways, such as by facilitating interagency communication 

and gathering information.

We found that the data the IACC used and reported in its portfolio 

analysis and related web tool had limitations that prevented the IACC 

from effectively monitoring and coordinating federal autism research and 

non-research activities. Specifically, we found that the data used by the 

IACC had the following limitations:

• Outdated information. The most recent portfolio analysis and web tool 

contained data from 2010, which was not useful in identifying gaps in 

current research as they relate to the strategic plan objectives. For 

example, CDC officials commented that a more up-to-date portfolio 

analysis would have been helpful when developing the 2012 strategic 

plan update, which was prepared in the summer and fall of 2012. 

Additionally, agencies could not use these data to determine whether 

a prospective autism-related research project was potentially 

duplicative of a new project funded since 2010.

• Not tracked over time. Information on the research projects relating to 

autism was reported for one year only and not for multiple years 

combined. The portfolio analysis and web tool included information on 

whether a certain objective in the strategic plan had been met for a 

particular year; however, information on the progress of the objectives 

over time had not been presented.40

 

40The portfolio analysis and web tool indicate whether an objective has been fulfilled 

based on the funding of projects related to that objective in a given year and annualized 

funding goals for each objective set by the IACC.

OARC officials stated that the 

goal of the portfolio analysis and web tool has not been to compare 

funding year to year.

Shortcomings in the 

IACC’s Data Limited Its 

Ability to Coordinate and 

Monitor Federal Autism 

Activities
 

Page 25 GAO-14-16 Federal Autism Activities

• Inconsistent. The guidance and methodology for determining what 

projects constitute research has changed over the years. As a result, 

the projects included in the portfolio analysis and web tool have 

varied. Specifically, the 2010 portfolio analysis included projects 

HRSA funded under its training activities—training health 

professionals on evidenced-based services for those with autism and 

other developmental disabilities, and how to confirm or rule out an 

autism diagnosis. According to OARC officials, these projects were 

not included in prior years because they were not aware that HRSA’s 

training projects could have possible relevance to the objectives in the 

strategic plan. Once OARC learned about these projects, OARC 

officials asked HRSA to include these projects in the portfolio 

analysis. Subsequently, in response to feedback from the IACC, 

OARC’s recent request to agencies for 2011 and 2012 funding data 

included guidance stating that agencies should not include projects 

that solely involve the training of professionals.41

• Incomplete. We identified 16 autism research projects that were not 

included in the IACC data, such as a DOD Air Force study on autism 

gene sequencing and other topics, and autism research projects 

funded by Education and HRSA.42 For example, Education officials 

told us that the agency funded a study in 2008 to address challenges 

faced by geographically remote families in accessing effective 

intervention services for their young children diagnosed with autism; 

however, this project was not included in the IACC’s data.43

Besides autism research projects, the portfolio analysis and strategic plan 

contain limited information on non-research autism-related activities, and 

the IACC did not have a mechanism to collect information on such 

activities. As part of its data collection for the portfolio analysis, the IACC 

sometimes obtained information from agencies on non-research autismrelated activities that related to the strategic plan, which were 

 

41The guidance states that project information should only be provided if a project relates 

to evaluating training for service providers. Projects that solely involved the administration 

of services were not to be provided.

42The DOD Air Force study, Comprehensive Clinical Phenotyping and Genetic Mapping 

for the Discovery of Autism Susceptibility Genes, was conducted with the Research 

Institute at Nationwide Children’s Hospital in Ohio and awarded funds in 2008 and 2009.

43The Education study, Combining Technologies to Maximize Outcomes: Telemedicine 

and Online Training Program for Parents of Children with Autism, was awarded funds in 

2008.
 

Page 26 GAO-14-16 Federal Autism Activities

subsequently included in the portfolio analysis. However, agencies, 

organizations, and individuals seeking information on non-research 

autism-related activities would likely not expect to find such information in 

the portfolio analysis and web tool because the titles and descriptions 

imply that they are focused on autism research.44

These data limitations hindered the IACC’s efforts to coordinate HHS 

autism research and monitor the federal autism environment, as required 

by the CAA. We have previously reported that tracking and monitoring are 

key activities that can benefit interagency collaborative mechanisms, such 

as the IACC.

According to many 

nonfederal IACC members, as well as some federal members, the IACC 

has not given enough attention to the coordination and monitoring of nonresearch autism-related activities. As a result, a complete accounting of 

federal non-research activities was lacking.

45 In addition, federal internal control standards state that 

organizations should monitor and assess their performance over time to 

help ensure that they meet their goals and objectives. Federal internal 

control standards also call for data that allows for comparisons and 

assessments on organizational progress.46 However, the shortcomings in 

the IACC’s data prevent accurate measurement of its effort to coordinate 

and monitor. For example, without assessing data over time, information 

on progress and gaps in autism research may be misleading and 

incomplete. We found that, when looking across multiple years, some 

agencies funded more autism research projects than were suggested in 

the associated strategic plan objective, whereas other objectives were not 

funded by an agency.47

 

44The most recent portfolio analysis is described as including information on autism 

research funded by major federal agencies. The portfolio analysis also includes 

information on autism research funded by certain nonfederal organizations.

In addition, inconsistency in the data made it 

difficult to accurately determine how much an increase in the funding of 

autism research was due to an actual increase in research versus the 

inclusion of more projects in the analysis. For example, in its most recent 

portfolio analysis, the IACC stated that, while many funders participating 

45In prior work, we established certain key features that benefit collaborative mechanisms 

(see GAO-12-1022). 

46GAO/AIMD-00-21.3.1.

47For example, while 1 objective recommended launching 3 projects related to underlying 

biological pathways of genetic conditions related to autism, 72 projects were funded from 

fiscal year 2008 through 2012.
 

Page 27 GAO-14-16 Federal Autism Activities

in the previous analysis increased their investment levels, the increase in 

autism research funding, when compared to the prior year’s report, was 

largely attributed to the inclusion of more projects and funders. Lastly, we 

believe that such shortcomings in the data limited agencies ability to use 

these data to identify opportunities for coordination of resources or 

projects, or identify duplicative research that could have been avoided, 

consolidated, or eliminated.

In fiscal year 2013, during the course of our review, the IACC took actions 

to reduce some of its data limitations. In January 2013, OARC, on behalf 

of the IACC, began collecting data on the autism research projects 

agencies funded in 2011 and 2012. OARC officials stated that they were 

collecting this data in order to have more recent information for the IACC 

to use when developing the 2013 strategic plan update. In addition, 

during its July 2013 committee meeting, the IACC discussed its intentions 

to update the strategic plan, including reviewing more recent agency data, 

as well as data over time. For the IACC’s review, for example, OARC 

planned to prepare data on agencies’ autism research projects funded 

from 2008 through 2012 for each research area and the objectives within 

those areas. When we asked whether this dataset would be made 

publicly available, OARC officials stated that the data would be published 

around the time the portfolio analysis is published, which OARC expects 

to be in the first quarter of calendar year 2014.48 In September 2013, 

OARC began providing certain IACC members with draft templates for 

how some of these data could be presented. The committee planned to 

develop the 2013 update to the strategic plan in the fall of 2013 and 

expected to complete the report by December 31, 2013.

We found limited instances of coordination among the 10 agencies that 

we reviewed and found that all of these agencies lacked robust or routine 

procedures for monitoring federal autism activities. Two agencies, CDC 

and HRSA, coordinated their autism activities by holding regular meetings 

to, for example, share information on project updates and explore 

potential opportunities for collaboration. These agencies coordinated their 

 

48According to OARC officials, the web tool will also be released in the first quarter of 

calendar year 2014. At the time of our review, OARC officials were not certain whether the 

portfolio analysis would include 2011 and 2012 data combined or separated; however, 

they stated that the web tool would report the data separately, similar to the presentation 

of prior years’ data.

Federal Agencies’ 

Coordination and 

Monitoring of Autism 

Activities was Limited
 

Page 28 GAO-14-16 Federal Autism Activities

autism activities in a manner that was consistent with key collaboration 

practices to enhance and sustain coordination that we have identified in 

prior work.49

A few agencies co-managed individual autism research projects and held 

joint meetings with their grantees.

These key practices include agreeing on roles and 

responsibilities and establishing a means to operate across organizational 

boundaries. For example, officials from CDC and HRSA worked together 

with HRSA grantees to promote and evaluate CDC’s awareness 

campaign for autism and other developmental disabilities. CDC officials 

said that they and HRSA officials have a good understanding of each 

other’s roles and autism activities.

50

A few agencies also had officials that served on other agencies’ advisory 

committees related to autism research or other autism-related activities. 

For example, DOD’s Autism Research Program Integration Panel 

included a representative from NIH in fiscal years 2008 and 2009, and 

recently included a representative from CDC who had been on the panel 

since fiscal year 2011. In addition, a CDC official served on an advisory 

council related to research HRSA funded on autism interventions for 

physical health; and a HRSA official served as a liaison on an advisory 

board for a non-research autism-related activity funded by Education.

For example, EPA and NIH jointly 

funded research studying environmental exposures in relation to 

children’s health and autism. Similarly, CDC and NIH jointly funded a

research project to investigate reports of elevated prevalence of autism 

among Somali-American children in Minneapolis. According to CDC 

officials, the joint effort allowed CDC to provide scientific oversight and 

technical assistance to the grantee, which used CDC’s surveillance 

methods, while NIH provided scientific consultation. The two agencies, 

along with a nonfederal organization, held regular meetings with their 

grantee.

Agencies also provided examples of informal communications they had 

with other agencies. For example, although there were no regularly 

scheduled formal meetings with NIH, officials from CDC and HRSA stated 

 

49GAO-06-15. 

50We found some other instances where an agency funded another agency to conduct 

research or other activities through an interagency agreement or memorandum of 

understanding; however, the projects were not co-managed.
 

Page 29 GAO-14-16 Federal Autism Activities

that their staff have ongoing informal communication with NIH staff and 

may involve them in grant reviews, workshops, and meetings. CDC and 

HRSA may also preview NIH funding opportunity announcements. NIH 

officials told us that, when NIH is considering funding research similar to 

that of another agency, NIH staff discuss their plans with that agency to 

pre-empt unnecessarily duplicative research; NIH officials provided one 

example of a recent instance when they contacted another agency in this 

regard. However, NIH officials also stated that because many of the 

agency’s research project applications, including those related to autism 

research, are investigator-initiated, coordination with other agencies 

during program development is not always possible.

Nevertheless, we noted that agencies did not have robust and routine 

monitoring procedures or methods to ensure that duplication is 

minimized. As established in our recent duplication work, it is important 

for agencies that fund research on topics of common interest, such as 

autism, to monitor each others’ activities in order to reduce the potential 

for unnecessary duplication.51 It is also a federal internal control standard 

that agencies establish a means of communicating with, and obtaining 

information from, other agencies that could impact their operations, 

performance, and resource allocations.52 Of the 10 agencies we spoke 

with, 5 agencies stated that they monitored federal autism activities by 

searching databases or websites, but those searches were limited and 

some agencies did not have formal policies or procedures that staff must 

follow. For example, DOD and NIH conducted searches to ensure that the 

principal investigator was not receiving funding from another agency for 

the same project.53

 

51See for example, 

AHRQ also may conduct a similar search related to 

the principal investigator. However, these limited searches would not 

identify whether these agencies were funding similar projects led by 

GAO-13-279SP and GAO-12-342SP. 

52See federal internal control standard for information and communications. 

GAO/AIMD-00-21.3.1. 

53In addition, NIH officials stated that, before awarding funding, NIH program and grants 

management staff are to ensure that there is no budgetary, scientific, or commitment 

overlap by reviewing documentation of “other support” identified by the applicant (which 

includes all financial resources, whether federal, nonfederal, commercial or organizational, 

available in direct support of an individual’s research endeavors, including, but not limited 

to, research grants, cooperative agreements, contracts, or organizational awards, but not 

training awards, prizes, or gifts). Officials from AHRQ, DOD, Education, and NSF also told 

us they rely on similar disclosure from applicants.
 

Page 30 GAO-14-16 Federal Autism Activities

different principal investigators. The 5 agencies told us they conducted 

the following searches:

• AHRQ officials told us that, before funding a systematic review, they 

reviewed a number of databases, such as RePORTER and 

www.clinicaltrials.gov, a database that contains information on 

federally funded as well as non-federally funded studies. AHRQ 

officials said that they search the databases to determine if a similar 

systematic review has been conducted or if a major clinical trial is 

underway. In the latter instance, AHRQ may wait to fund a systematic 

review until the clinical trial is complete so it can be included in its 

review. AHRQ officials told us that for those projects that are not 

systematic reviews, they searched databases using the principal 

investigator’s last name and the term “autism.”

• CDC officials stated that they informally review Grants.gov, the central 

grant identification and application portal for federal grant programs, 

when developing a new program announcement.

• DOD officials told us that, before funding a project, they search the 

NIH database RePORTER—which includes projects funded by NIH—

using the principal investigator’s name and other terms. DOD officials 

also stated that they review NIH’s institutes’ websites as a source of 

information when determining their autism research priorities.

• HRSA officials said that they check RePORTER for similar autism 

projects on a quarterly basis using the search terms “autism” and 

“ASD;” however, the agency does not have written policies for the 

search. HRSA officials told us that they do not search other agencies’ 

websites or databases on a regular basis.

• NIH officials told us that they search their own databases, including a 

database that contains information about research funded by NIH, 

AHRQ, CDC, and other agencies.

Several agency officials also told us that they rely on their peer reviewers, 

other experts, and project officers to have knowledge of the current 

autism research environment. For example, officials at AHRQ, DOD, 

Education, and NIH stated that they consider the opinions of peer 

reviewers, who are typically scientists or professors who review proposals 

for scientific merit, to determine whether applications may be duplicative 

of other research. DOD officials also told us that they rely on their Autism 

Research Program Integration Panel to be knowledgeable of research 

funded by other agencies. NIH officials stated that project officers have an 

in-depth understanding of the scientific subject matter related to their 
 

Page 31 GAO-14-16 Federal Autism Activities

grant portfolios.54

Apart from their participation on the IACC, some agencies did not provide 

examples of actions they had taken to coordinate with or monitor other 

agencies’ autism activities. For example, when we asked about the 

mechanisms used to coordinate and monitor autism activities, CMS 

stated that it interacted with other federal agencies through its IACC 

participation. Officials also stated that it is not common for CMS to fund 

autism research projects. In addition, although HRSA told us that one of 

their staff participated on an advisory committee for one Education nonresearch autism-related activity, Education officials did not provide 

examples of coordination efforts; Education is a member of the IACC. 

NSF, which is not an IACC member, does not coordinate or monitor its 

autism activities with other agencies to prevent unnecessary duplication. 

NSF officials stated that while they may fund research related to autism, 

they generally do not solicit autism research.

According to NIH officials, their project officers keep

abreast of the scientific literature, attend professional and scientific 

meetings, and interact with the principal investigator and other scientific 

staff at the grantee institution.

Given that each agency we reviewed funded at least one autism research 

project in the same strategic plan objective as another agency from fiscal 

years 2008 through 2012, and some objectives were funded by multiple 

agencies, current coordination and monitoring efforts may be insufficient. 

For example, while DOD officials told us that they review NIH websites 

when determining their autism research priorities, we found that DOD 

funded autism research projects related to most of the same strategic 

plan objectives as NIH, which could potentially result in unnecessarily 

duplicative research.55

 

54Project officers are agency officials that are responsible for managing and overseeing 

grants.

In addition, NSF—an agency that did not 

coordinate with other agencies regarding autism research—funded 

55Our prior work identified limitations in the ability of DOD and NIH to readily access 

comprehensive medical research information funded by other agencies. See 

GAO-12-342SP. DOD officials stated that DOD and NIH are working together to address 

these concerns. Specifically, NIH has provided a DOD official with access to an NIH 

database that contains information about certain funded health research projects. 

According to DOD officials, they intend to begin expanding this effort to all programs 

funded by DOD’s Office of Congressionally Directed Medical Research Programs in the 

beginning of calendar year 2014, but could not provide specifics on when it would be 

expanded to autism research. 
 

Page 32 GAO-14-16 Federal Autism Activities

research projects that related to the same objectives as projects funded 

by both NIH and DOD.

Funding similar research on the same topic area—such as autism—is 

sometimes appropriate and necessary; for example, for purposes of 

replicating or corroborating prior research results. In addition, having 

multiple agencies with different expertise involved in autism activities—

both research and other related activities—can be advantageous. One 

such advantage is that agencies may be better able to tailor research or 

other programs to suit their specific missions and needs. However, having 

multiple agency involvement can also make it challenging to identify gaps 

and allocate resources across the federal government efficiently. Given 

that 12 federal agencies spent at least $1.4 billion on autism research and 

other autism-related activities from fiscal years 2008 through 2012, and 

that multiple agencies have funded autism research related to the same 

objectives, it is incumbent on the agencies to effectively coordinate and 

monitor each other’s autism research. Not doing so could lead to 

numerous projects being funded to address a few specific areas within 

the realm of autism research—some of the projects having the potential 

to be unnecessarily duplicative—while other areas may be left 

unexplored.

Interagency committees—such as the IACC—can aid agencies’ efforts to 

coordinate and monitor. The IACC’s charge to coordinate autism activities 

of HHS and to monitor federal autism activities provides the IACC with the 

opportunity to play an important role in maximizing the effectiveness and 

efficiency of the federal investment in autism activities, and in minimizing 

the inefficient use of federal resources due to unnecessary duplication of 

effort. However, the weaknesses in the IACC’s data limits agencies’ 

abilities to identify the autism research that has been recently funded, any 

gaps in or potential opportunities for funding, possible opportunities for 

efficiencies, or possible duplication. In addition, the focus of the strategic 

plan and portfolio analysis on autism research and limited focus on nonresearch activities restricts the ability of the IACC to monitor non-research 

autism-related activities funded by the federal government, and may 

affect agencies’ abilities to identify duplicative efforts related to these 

activities.

Apart from the IACC, there are limited instances of agencies 

independently coordinating their own autism activities. Agencies lack 

robust and routine procedures for monitoring the projects that other 

agencies are funding. Such monitoring would help avoid unnecessary 

Conclusions 
 

Page 33 GAO-14-16 Federal Autism Activities

duplication of autism research. It may also help identify potential 

opportunities for further coordination, since agencies can only coordinate 

with each other when they are aware of relevant research or other 

activities. Ultimately, agency coordination and monitoring would help 

ensure that scarce federal resources are used as efficiently as possible.

To improve the usefulness of IACC data and enhance its efforts to 

coordinate HHS autism activities and monitor all federally funded autism 

activities, we recommend that the Secretary of Health and Human 

Services direct the IACC and NIH, in support of the IACC, to take the 

following three actions:

• provide consistent guidance to federal agencies when collecting data 

for the portfolio analysis and web tool so that information can be more 

easily and accurately compared over multiple years;

• create a document or database that provides information on nonresearch autism-related activities funded by the federal government 

and make this document or database publicly available; and

• identify projects through its monitoring of federal autism activities—

including OARC’s annual collection of data for the portfolio analysis 

and the IACC’s annual process to update the strategic plan—that may 

result in unnecessary duplication and thus may be candidates for 

consolidation or elimination, and identify potential coordination 

opportunities among agencies.

To promote better coordination among federal agencies that fund autism 

research and avoid the potential for unnecessary duplication before 

research projects are funded, we recommend that the Secretary of Health 

and Human Services, the Secretary of Defense, the Secretary of 

Education, and the Director of NSF each determine methods for 

identifying and monitoring the autism research conducted by other 

agencies, including by taking full advantage of monitoring data the IACC 

develops and makes available.

We provided a draft of this report to DOD, Education, HHS, and NSF for 

comment, which are reprinted in appendixes V through VIII, respectively. 

Our first recommendation was directed to HHS exclusively. HHS did not 

concur with this recommendation. Our second recommendation was 

directed toward all four agencies. DOD agreed with this recommendation. 

Although the other three agencies did not explicitly state agreement with 

Recommendations 

Agency Comments 

and Our Evaluation
 

Page 34 GAO-14-16 Federal Autism Activities

the recommendation, their comments suggested that they view the 

opportunity to enhance the coordination of federal autism research 

activities positively. These three agencies also expressed concern about 

certain of the report’s conclusions as described in detail below. In addition 

to general comments, Education and HHS also provided technical 

comments, which we incorporated as appropriate.

HHS did not concur with our first recommendation that the agency take 

three specific actions to improve the usefulness of the IACC data. First, 

HHS did not concur that the IACC and NIH should take action to provide 

consistent guidance to federal agencies when collecting data for the 

portfolio analysis. HHS commented that OARC has used a consistent 

methodology and provided consistent guidance to agencies when

collecting data for the portfolio analysis on behalf of the IACC. It also 

emphasized that it has balanced the need for consistency with the need 

to be responsive to feedback from the IACC and from those participating 

in the portfolio analysis. While we agree with HHS that it is important to 

be responsive to feedback and make adjustments to guidance as 

necessary to improve data collection, we believe that annual changes of 

the type we observed are not productive. The exclusion of training 

projects in one year of data collection, their inclusion in the subsequent 

year, and their partial exclusion in the next year is a change in 

methodology and guidance that makes it difficult to analyze and interpret 

data over time. Additionally, OARC did not provide consistent guidance to 

organizations—both federal and nonfederal—that submit information for 

inclusion in the portfolio analysis. For example, in the year that OARC 

requested HRSA to include its training projects in the portfolio analysis, it 

did not make the same request of other organizations and its guidance 

did not mention that these specific types of projects should be included in 

the data submitted to OARC. We therefore continue to believe that 

guidance should be developed so that accurate, consistent, and 

meaningful comparisons of changes in federal funding of autism research 

can be made over time and used to inform future funding decisions.

Second, HHS did not concur that the IACC and NIH should take action to 

create a document or database that provides information on non-research 

autism-related activities. HHS commented that this information was 

already publicly accessible and cited a report to Congress published by 
 

Page 35 GAO-14-16 Federal Autism Activities

OARC in December 2010.56

Third, HHS did not concur that, through its monitoring activities, the IACC 

and HHS should take action to identify projects that may result in 

unnecessary duplication and thus may be candidates for consolidation or 

elimination. However, HHS said that it will continue to support the IACC in 

its activities to coordinate HHS efforts and identify opportunities for crossagency coordination. HHS stated that an analysis by the IACC to identify 

duplication would not likely provide the type of information on actual 

duplication needed by agency officials when making funding decisions. 

HHS said that even if the IACC further refined its analysis to identify 

several grants on the same general topic within each research objective 

as potentially duplicative, this type of information would lack adequate 

specificity to be useful to agency officials who are involved in the grant 

award process. We agree that the specific projects identified in the 

analysis proposed by HHS would need to be reviewed further to identify 

actual duplication—defined as projects with the same purpose, strategies, 

and target population that are not necessary to, for example, corroborate 

or replicate prior research results. However, we believe that the IACC’s 

identification of such projects would be worthwhile as it could effectively 

While this report contained information on 

federally funded autism activities from fiscal years 2006 through 2009, it 

did not include all of the non-research autism-related activities we 

identified in our report. In addition, while helpful, the report is nonetheless 

a static document. There is no single repository for information on nonresearch autism-related activities funded by the federal government since 

2009—a shortcoming that has prevented effective monitoring of these 

activities since that year. HHS also commented that, as required by the 

reauthorization of the CAA, it would be providing a report to Congress to 

be released to the public in the fall of 2013. HHS stated that this report

would include information on research, services, and other non-research 

autism activities that were supported by federal agencies from fiscal years 

2010 through 2012. While this document could be a starting point from 

which the IACC could begin to regularly catalog non-research autismrelated activities, we believe that having a document or database that 

contains current information on these activities is an important aspect of 

fulfilling the IACC’s responsibility to monitor all federal autism activities, 

not just research.

 

56See HHS, OARC, NIH, Report to Congress on Activities Related to Autism Spectrum 

Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 

(FY 2006 – FY 2009) (Rockville, Md.: December 2010, revised April 2011).
 

Page 36 GAO-14-16 Federal Autism Activities

lead to their further review by the funding agencies. In addition, HHS 

commented that it does not believe there is too much federal activity 

related to autism and that the IACC role should not include identification 

of autism-related projects for elimination. It should be noted that our 

report does not state—and should not be interpreted as suggesting—that 

there is too much federal activity related to autism. We recognize that 

autism is an important public health concern affecting a large number of 

people. However, this makes it all the more important that scarce federal 

resources be used wisely. Prudent stewardship requires a careful 

assessment of research spending. Many agencies currently devote 

considerable time to identifying and providing HHS with spending 

information and HHS invests in this data collection. However, we question 

the purpose of devoting federal resources to collecting these data, if they 

are not then used to ensure federal funds are used appropriately. The 

IACC data can be used to drill down to help identify unnecessary 

duplication and opportunities to enhance coordination. A thorough review 

of autism data is particularly important to ensure federal funds are used 

efficiently and effectively. While, we agree that the IACC does not have 

the authority to eliminate duplicative projects, it does have the 

responsibility to make recommendations to the Secretary of Health and 

Human Services. If unnecessary duplication or opportunities to enhance 

coordination between HHS agencies were identified, the IACC could 

make related recommendations that would carry important weight.

DOD concurred with our second recommendation to improve coordination 

among federal agencies, and comments from Education, HHS, and NSF 

suggest that these agencies support improving the coordination of federal 

autism research activities. DOD, Education, and NSF commented that 

they intend to work with the IACC and other agencies to share information 

related to autism research. HHS agreed that there should be continued 

coordination to avoid unnecessary duplication across research projects.

However, with the exception of DOD, the agencies included comments 

suggesting that they were concerned with the report’s conclusion that 

some federal autism research projects had the potential to be duplicative. 

Specifically, the agencies stated the following:

• Education did not concur with the conclusions that the majority of 

federally-funded autism research projects had the potential to be 

duplicative. The agency stated that, because the IACC’s strategic plan 

objectives are broad, projects categorized under the same objective 

cannot be fairly judged as potentially duplicative without more 

substantial exposition.
 

Page 37 GAO-14-16 Federal Autism Activities

• HHS stated that research funded under the same objective does not 

necessarily indicate duplication, as the objectives represent broad and 

complex areas of research.

• NSF stated that the categorization of its projects to, for example, the 

research area of biology, does not indicate that these projects are 

duplicative of other agencies’ projects about the biology of autism.

We stated in our draft report that our methodology of using the 

categorization of projects to the same strategic plan objective or research 

area does not indicate actual duplication; however, we added language to 

the final report to make this point clearer. We agree that more information 

on the specific projects funded within each objective would need to be 

assessed in order to determine actual duplication. However, the fact that 

research is categorized to the same objectives suggests that there may 

be duplicative projects being funded. Education, HHS, and NSF did not 

provide any information throughout the course of our work or in their 

comments indicating that they had reviewed these projects to ensure that 

they were not unnecessarily duplicative. 

In addition, two agencies—HHS and NSF—included comments 

suggesting that they were concerned about the report’s conclusion that 

the coordination and monitoring of federal autism activities were limited. 

Specifically, 

• HHS did not concur with the conclusion that federal agencies’ 

coordination and monitoring of autism activities was limited. HHS 

commented that it has extensive policies in place to prevent 

duplicative projects and that it would continue its procedures for 

avoiding duplication. HHS stated that an NIH research project 

applicant is required to indicate the other agencies to which the 

application has been submitted. In addition, the applicant is required 

to indicate the financial support received for the project. According to 

HHS, it is the responsibility of NIH staff to review this information to 

ensure that NIH is not funding the applicant for the same research 

project funded by another agency. HHS also cited an NIH database 

that is used extensively by NIH staff to obtain and manage information 

related to research project funding decisions.

• NSF also commented on activities it undertakes to avoid duplication 

and stated that it takes steps to ensure that it does not fund the same 

research project by the same applicant if it is already supported by 

another agency.
 

Page 38 GAO-14-16 Federal Autism Activities

The procedures described by both agencies were outlined in our draft 

report. While important, they are not sufficiently comprehensive and are 

limited in that they only look to identify duplicative projects led by the 

same principle investigator. They do not identify project applications led 

by another principle investigator that may be unnecessarily duplicative of 

a project that has already been federally funded—a project with the same 

purpose, strategies, and target population that is not necessary to, for 

example, corroborate or replicate prior research results. For example, 

while the NIH database cited in HHS’s comments could be a helpful 

coordination tool, our report points out that NIH’s database search was 

limited in that its purpose was to ensure that a principal investigator was 

not receiving funding from another agency for the same project. The 

search would not identify similar projects led by different principal 

investigators. Therefore, we stand by our conclusion that these agencies’ 

methods to monitor and coordinate autism activities are limited. 

HHS also commented that our draft report implied that it is wasteful for 

more than one federal agency to address a strategic plan objective. HHS 

said that the strategic plan objectives describe the minimum effort that 

would be required to address the complex issues set in each objective. 

Our report does not state this, nor do we believe that having more than 

one project per objective is inappropriate. Our report acknowledges that 

funding similar research on the same topic is sometimes appropriate and 

necessary. We agree that it may be beneficial to have multiple projects 

and agencies associated with the same strategic plan objective; however, 

we contend that it is important to carefully review the data to ensure that 

projects are indeed essential to achieve research goals and not 

unnecessarily duplicative. Using the data collected by HHS and analyzing 

it over time, provides an important opportunity for the IACC to determine 

whether its coordination efforts are successful. Doing so can provide 

important information on both progress and gaps in autism research, and 

identify areas of potential duplication to investigate further. For example, 

as we noted in our draft report, we found that 1 objective—which 

recommended testing 4 methods to improve dissemination, 

implementation, and sustainability of evidenced-based interventions, 

services, and supports in diverse community settings—had 20 projects 

associated with it that were funded by 5 different agencies from fiscal 

years 2008 through 2012. We believe it is important that these projects be 

reviewed further. While all of these projects are perhaps necessary to 

achieve research goals and are not duplicative, without conducting a 

thorough review of the data, it is not clear that this is, indeed, the case.
 

Page 39 GAO-14-16 Federal Autism Activities

Finally, HHS stated that our draft report was incorrect in stating that we 

had identified 16 projects that were omitted from the IACC’s data. HHS 

said that the number we reported should have been 14. We disagree. We 

provided OARC with a list of 18 projects that we initially identified as 

missing from the IACC’s data. OARC provided us with additional 

information for 2 of these projects. As a result, there were 16 projects—

with total award funding of approximately $74 million—that we identified 

that were not included in the IACC’s data. Further, HHS explained that 

the projects that were not included in the IACC data were either projects 

that the agencies funded before the agencies had been included in the 

portfolio analysis, or projects that agencies did not submit to OARC 

during data collection for the portfolio analysis. We understand that, to a 

certain extent, OARC must rely on federal agencies to disclose the autism 

research projects they fund. However, 7 of these 16 projects—which were 

awarded funds totaling approximately $69 million—were NIH-funded 

projects, the agency in which OARC resides.

We are sending copies of this report to the Secretary Health and Human 

Services, the Secretary of the Department of Defense, the Secretary of 

the Department of Education, the Director of the National Science 

Foundation, and to other interested parties. The report will also be 

available at no charge on the GAO website at http://www.gao.gov. 

If you or your staff have any questions about this report, please contact 

me at (202) 512-7114 or crossem@gao.gov. Contact points for our Office 

of Congressional Relations and Public Affairs may be found on the last 

page of this report. GAO staff who made major contributions to this report 

are listed in appendix IX. 

Marcia Crosse

Director, Health Care
Page 40 GAO-14-16 Federal Autism Activities

List of Requesters

The Honorable Tom Coburn, M.D.

Ranking Member, Committee on Homeland Security and 

 Governmental Affairs

United States Senate

The Honorable Ron Johnson

United States Senate

The Honorable Mike Lee

United States Senate

The Honorable Robert Menendez

United States Senate
Appendix I: Methodology for Analyzing 

Potential Duplication of Federally Funded 

Autism Research and Other Activities

Page 41 GAO-14-16 Federal Autism Activities

First, we identified federal agencies that funded autism research and 

other autism-related activities from fiscal years 2008 through 2011 by 

interviewing the federal agencies on the Interagency Autism Coordinating 

Committee (IACC) and select nonfederal IACC members; reviewing IACC 

and agency documentation describing federal autism activities; and 

searching Grants.gov and the Catalog of Federal Domestic Assistance.1

We considered a federal agency to have funded autism research or an 

autism-related activity if the research project or activity was autismspecific or had an autism-specific component and was supported by 

federal funds awarded through mechanisms such as grants, cooperative 

agreements, or contracts, or was research conducted by scientists in 

government laboratories, known as intramural research.

We also included any agencies and the related research projects they 

awarded in fiscal year 2012, as identified in data that agencies submitted 

to the IACC.

2

 

1

We interviewed federal members of the IACC, with the exception of Administration for 

Children and Families (ACF) and the Food and Drug Administration. ACF awarded funds 

for one autism-related project in fiscal year 2012. The Food and Drug Administration did 

not fund any autism-related projects during the time frame of our review. We selected six 

nonfederal members to interview; however, in July 2013, one of the nonfederal members 

we interviewed stepped down from the IACC.

We excluded 

activities that provided a direct benefit to individuals with autism, such as 

insurance coverage to specific populations; housing assistance; and 

supplemental income. We also excluded funding provided to states to 

offer direct services to individuals with autism or their families, such as 

educational services. Additionally, we excluded federally funded 

workshops and meetings from our review. Furthermore, with the 

exception of intramural research, we excluded activities that the agencies 

undertook directly. These included, for example, the inclusion of 

information on an agency website or fact sheets. Finally, we excluded 

research projects and non-research autism-related activities funded by 

nonfederal organizations. Based on our analysis, 12 agencies funded 

autism research and other autism-related activities between fiscal years 

2008 and 2012 that met our criteria.

2

A cooperative agreement is an alternative assistance instrument used instead of a grant 

whenever substantial federal involvement with the recipient during performance is 

anticipated.

Appendix I: Methodology for Analyzing 

Potential Duplication of Federally Funded

Autism Research and Other Activities 

Identifying Autism 

Research Projects and 

Other Autism-Related 

Activities
Appendix I: Methodology for Analyzing 

Potential Duplication of Federally Funded 

Autism Research and Other Activities

Page 42 GAO-14-16 Federal Autism Activities

We collected and reviewed the project information from each agency, 

such as research project numbers, award amounts, and project titles, 

where applicable, for fiscal years 2008 through 2011.3,4 We compared the 

agencies’ research projects to the projects in the IACC’s Autism 

Spectrum Disorder Portfolio Analysis Report and web tool data for fiscal 

years 2008, 2009, and 2010—the most recent portfolio analyses available 

at the time of our review—and reconciled any differences with the 

agencies.5

 

3

When collecting and analyzing data, we included a research project or a non-research 

autism-related activity in the fiscal year in which it was awarded funds—even if funds 

remained available for obligation in future fiscal years—or, as is the case with the 

Department of Defense, the fiscal year of the appropriation from which the project or 

activity was awarded funds. For example, if a research project was ongoing in another 

fiscal year, but did not receive an award in that year, we included the project in the fiscal 

year in which it received an award only. The Agency for Healthcare Research and Quality 

(AHRQ) and Centers for Medicare & Medicaid Services (CMS) each awarded one contract 

under which multiple autism-related projects were conducted. The Department of 

Education (Education) and Substance Abuse and Mental Health Services Administration 

(SAMHSA) also awarded contracts of which an autism project was one component. 

Funding is not broken out in these contracts by research project; therefore, the award 

amounts that we report for the AHRQ, CMS, Education, and SAMHSA autism projects 

under each contract are the agencies’ estimates of the amount of the overall contract 

awards that was intended to support these projects or activities.

In January 2013, while our work was in progress, we learned 

that the Office of Autism Research Coordination (OARC), on behalf of the 

IACC, requested fiscal years 2011 and 2012 autism research project data 

from the agencies for its forthcoming portfolio analysis and web tool, 

4

We counted a project once if the project had the same project number unless the title 

changed. If the project title changed during the time of our review period, we confirmed 

that the project start dates were the same. If the start dates were the same, we considered 

the project to be the same and counted it once. If the project start dates were different, we 

counted the project as a separate project. If the project start date was not available, we 

looked to see if other distinguishing characteristics, such as project description, were 

similar. We did not count a project as a “new” or “separate” project if the project received a 

new award for another project period—the total period for which support of a project has 

been programmatically approved. For example, a principal investigator may submit a 

competing continuation application to continue the project after the initial project period. In 

addition, the National Institutes of Health (NIH) supports discrete projects performed by 

investigators in their specific area of interest. It also supports organized efforts of several 

principal investigators conducting related research projects. In this latter case, we counted 

each project run by a separate principal investigator as a separate project.

5

For example, if the portfolio analysis included a project number not in the list provided by 

the agency, we inquired with the agency whether the project was autism-specific or had 

an autism-specific component and should therefore be included in our review. We 

obtained fiscal years 2009 and 2010 data online via the web tool. For fiscal year 2008, we 

obtained the portfolio analysis data from the Office of Autism Research Coordination.
Appendix I: Methodology for Analyzing 

Potential Duplication of Federally Funded 

Autism Research and Other Activities

Page 43 GAO-14-16 Federal Autism Activities

which we obtained from each agency to include in our analysis.6

The research projects and related award amounts included in our review 

differ from the research projects and funding amounts included in the 

portfolio analysis and web tool for several reasons:

We were 

unable to obtain fiscal year 2012 data for the Department of Defense 

(DOD). DOD’s fiscal year 2012 appropriation for its medical research 

programs, including autism, was available for obligation through the end 

of fiscal year 2013—September 30, 2013. At the time of our review, DOD 

had not submitted data on its fiscal year 2012 research projects in 

response to OARC’s request. As a result, our report does not include data 

on DOD’s fiscal year 2012 autism research.

• The portfolio analysis and web tool included projects funded by 

nonfederal organizations, which we did not include in our review.

• The portfolio analysis and web tool included research using broader 

criteria than that used in our review. For example, projects that 

focused on developmental disabilities in general may have been 

included in the portfolio analysis even if they did not have a 

component specific to autism. In addition, the portfolio analysis and 

web tool included some projects that we did not consider to be 

research, based on information collected and discussions with the 

agencies.7

• The portfolio analysis and web tool reported projects differently than 

what we used in our methodology. For example, a project was 

included twice in the portfolio analysis and web tool if the project 

received a supplemental award and base funding in the same year. In 

our analysis, we added the award amounts and counted the project 

once.8

 

6

We initially collected data directly from the individual federal agencies on their autism 

research and autism-related activities for which funds were awarded from fiscal years 

2008 to 2011. We opted to include the fiscal year 2012 research projects that agencies 

reported to OARC. We relied on the agency data we collected on the non-research 

activities awarded between fiscal years 2008 and 2011.

7

Over the years, OARC has changed its guidance on the types of projects to include in the 

portfolio analysis. The most recent guidance has more narrow criteria than past years, but 

since we reviewed data from multiple years, overall, the criteria was different.

8

If supplemental awards were categorized differently from the base project in the same 

year, we counted them as separate projects.
Appendix I: Methodology for Analyzing 

Potential Duplication of Federally Funded 

Autism Research and Other Activities

Page 44 GAO-14-16 Federal Autism Activities

• We identified more research projects than those included in the 

portfolio analysis web tool.

We analyzed potential duplication using the portfolio analysis data, which 

categorized each project to the research areas and objectives in the 

IACC’s Strategic Plan for Autism Spectrum Disorder Research.9

Objectives have been added to the strategic plan since its first issuance 

in 2009. For projects that span multiple years, we used the most recent 

year’s strategic plan research area and objective categories.10

To determine potential duplication in autism research, we identified 

research projects that were categorized to the same strategic plan 

objectives. For those projects that were not categorized to a specific 

objective, but were categorized to one of the seven research areas, we 

assessed duplication based on whether they were categorized to the 

same research area. Determining that projects were categorized to the 

same strategic plan objective or research area suggests potential, but not 

actual duplication. Funding similar research on the same topic is 

sometimes appropriate and necessary; for example, for purposes of 

replicating or corroborating prior research results. Determining actual 

duplication for research projects would require a more extensive review of 

voluminous and scientific data, and was beyond the scope of this study.

 

9

As part of its analysis for the portfolio analysis and web tool, OARC reviews the agency 

submissions and can change the strategic plan question and objective categorization if it 

thinks that a project should be categorized differently for consistency and accuracy 

purposes. At the time of our review, OARC had not conducted its analysis of some of the 

agencies’ fiscal year 2011 and 2012 data. Therefore, some of the projects in our review 

may be categorized to the strategic plan research areas and objectives differently than in 

the forthcoming fiscal year 2011 and 2012 portfolio analysis and web tool. This applies to 

approximately 34 projects. In addition, in its comments on a draft of this report, Education 

stated that, in August 2013, OARC and Education officials held a meeting to clarify the 

terms used to categorize projects. As a result, Education changed the categorization of 

select projects; however, Education officials stated that these changes would not have a 

material effect on this report.

10Projects may have been categorized to the strategic plan questions and objectives 

differently over time. According to OARC officials, this is mainly due to more objectives 

being added to the strategic plan as well as improved accuracy in the categorization by 

agencies. Because we are using the most recent fiscal year’s strategic plan question and 

objective categories, all of the funding for a project will be attributed to that category, 

regardless of whether the project was categorized differently in previous years.

Determining Potential 

Duplication of Autism 

Research Projects
Appendix I: Methodology for Analyzing 

Potential Duplication of Federally Funded 

Autism Research and Other Activities

Page 45 GAO-14-16 Federal Autism Activities

To assess whether there was actual duplication of non-research autismrelated activities we used the framework we established in our previous 

work, which states that duplication occurs when two or more agencies 

fund the same activities that target the same users.11 To determine if the 

activities were the same, we reviewed each activity’s purpose and 

strategy for achieving that purpose and reviewed the targeted population 

of the activities.

We took several steps to ensure that the data used to produce this report 

were sufficiently reliable. In addition to comparing agency data to data 

collected by OARC and following up with agency officials regarding any 

discrepancies in the data, we also gathered information from agencies on 

the internal controls they use for maintaining their data. We determined 

that the data were sufficiently reliable for the purposes of our study.

 

11See for example, GAO-13-279SP and GAO-12-342SP. 

Determining Duplication 

of Non-Research AutismRelated Activities

Data Reliability 

Assessment
Appendix II: List of Interagency Autism 

Coordinating Committee (IACC) Reports

Page 46 GAO-14-16 Federal Autism Activities

Report Description

Strategic Plan for Autism Spectrum 

Disorder Research (2009, 2010, 2011, 

2012)

According to the IACC, the Strategic Plan provides a blueprint for autism research that is 

advisory to the Department of Health and Human Services and serves as a basis for 

partnerships with other agencies and private organizations involved in autism research 

and services. The Strategic Plan is organized around seven questions asked by 

individuals with autism and their families (such as “When should I be concerned?”). Each 

of the seven sections includes a description of what is generally known from autism 

research for that particular question and what gaps remain, followed by what was learned 

during the previous year. The report also sets up short- and long-term research 

objectives based on autism research opportunities. The Combating Autism Act of 2006 

(CAA) requires that the Strategic Plan be updated on an annual basis.

Autism Spectrum Disorder Research 

Portfolio Analysis Report (2008, 2009, 

2010)

The Portfolio Analysis features autism project and funding information for certain federal 

agencies and private organizations. According to officials within the National Institutes of 

Health’s Office of Autism Research Coordination (OARC), the agencies and 

organizations in these reports have been identified by the IACC and OARC as being 

involved in autism research and have agreed to participate. According to the IACC, the 

intent of these analysis reports is to better inform the IACC and interested stakeholders 

about the funding landscape for a particular year. Additionally, the analysis examines the 

extent to which a particular year’s funding and research topics align with the IACC’s most 

recent Strategic Plan. The IACC reports that the Portfolio Analysis may also be used by 

federal agencies and private research organizations to help guide future funding priorities 

by outlining current gaps and opportunities in autism research, as well as serving to 

highlight current activities and research progress.

a

Summary of Advances in Autism Spectrum 

Disorder Research (2007, 2008, 2009, 

2010, 2011, 2012)

Each year the IACC releases its list of scientific advances in autism research. As reported 

by the IACC, the report highlights studies on autism published in the previous year in 

peer-reviewed journals and selected by members of the IACC. The number of studies 

featured over the years ranges from 20 to 54. The CAA requires that the IACC produce 

the Summary of Advances annually.

Autism Spectrum Disorder Research 

Publications Analysis: The Global 

Landscape of Autism Research

As reported by the IACC, this report describes several key aspects of worldwide autism

research publications, which may be used to inform planning and strategic funding 

decisions for future autism research. Autism-related research articles published between 

1980 and 2010 were analyzed to identify historical trends and publication outputs across 

the seven questions and research areas of the 2011 IACC Strategic Plan. Information 

found in the research publications was also used to assess the institutions conducting 

autism research, funding organizations supporting the research publications, and the 

extent of collaboration between authors from different countries and research institutions. 

Additionally, measures, such as citation counts, were used as an assessment of the 

impact of the published research. OARC officials told us that there are no plans to update 

this report annually.

b

Source: GAO review of IACC documents.

Note: The years listed next to the report title are the years to which the report applies, which may not 

be the same year the report was published. For example, the 2010 Autism Spectrum Disorder 

Research Portfolio Analysis Report was published in July 2012.

a

OARC, National Institute of Mental Health, prepared this report on behalf of the IACC. For the 2009 

report, OARC, National Institute of Mental Health, and Acclaro Research Solutions, Inc., prepared the 

report on behalf of the IACC.

b

Appendix II: List of Interagency Autism 

Coordinating Committee (IACC) Reports

OARC, National Institute of Mental Health, and Thomson Reuters, Inc. prepared this report on behalf 

of the IACC.
Appendix III: Federal Autism Research 

Projects by Interagency Autism Coordinating 

Committee Strategic Plan Objective

Page 47 GAO-14-16 Federal Autism Activities

Eleven federal agencies awarded approximately $1.2 billion to fund 

autism research projects from fiscal years 2008 through 2012.1 These 

agencies are Department of Defense (DOD); Department of Education 

(Education); the Environmental Protection Agency (EPA); the National 

Science Foundation (NSF); and 7 agencies within the Department of 

Health and Human Services—Administration for Children and Families 

(ACF), Agency for Healthcare Research and Quality (AHRQ), Centers for 

Disease Control and Prevention (CDC), Centers for Medicare & Medicaid 

Services (CMS), Health Resources and Services Administration (HRSA), 

National Institutes of Health (NIH), and Substance Abuse and Mental 

Health Services Administration (SAMHSA). This appendix includes the 

autism research projects funded by these agencies, as categorized to the 

Interagency Autism Coordinating Committee’s (IACC) strategic plan 

objectives. Research projects were categorized to the objective that best 

describes each project according to the strategic plan; however, research 

projects may not address all aspects of the objective.

 

1

Twelve agencies were included in the scope of our review. However, the Administration 

for Community Living (ACL) did not fund autism research from fiscal year 2008 through 

fiscal year 2012. ACL funded one non-research autism-related activity during this time 

period and so it is not discussed in this appendix.

Appendix III: Federal Autism Research 

Projects by Interagency Autism Coordinating 

Committee Strategic Plan Objective
Appendix III: Federal Autism Research 

Projects by Interagency Autism Coordinating 

Committee Strategic Plan Objective

Page 48 GAO-14-16 Federal Autism Activities

Table 1: Number of Federal Agency Autism Research Projects and Funding by Interagency Autism Coordinating Committee 

Strategic Plan Objective, by Agency, Fiscal Years 2008 through 2012

Strategic Plan 

Research Area 

and Objectives Description of Objective a Agency

Number of 

Research 

Projects Funds Awarded

Research area 1: Diagnosis

1.S.A Develop, with existing tools, at least one efficient diagnostic 

instrument (i.e., briefer, less time intensive) that is valid in 

diverse populations for use in large-scale studies by 2011.

NIH 11 $12,863,563

1.S.B Validate and improve the sensitivity and specificity of new or 

existing screening and diagnostic tools, including 

comparative studies of general developmental screening 

versus autism-specific screening tools, in both high-risk and 

population-based samples, including those from resourcepoor international settings and those that are diverse in terms 

of age, socio-economic status, race, ethnicity, gender, 

characteristics of autism, and general level of functioning by 

2012.

ACF 1 100,000

AHRQ 1 1,901,626

NIH 7 4,620,220

1.S.C Conduct at least three studies to identify reasons for the 

health disparities in accessing early screening and diagnosis 

services, including identification of barriers to implementation 

of and access to screening, diagnosis, referral, and early 

intervention services among diverse populations, as defined 

by socioeconomic status, race, ethnicity, and gender of the 

child, by 2012.

NIH 2 455,081

SAMHSA 1 450,000

1.S.D Conduct at least two studies to understand the impact of 

early diagnosis on choice of intervention and outcomes by 

2015.

No federal projects funded

1.S.E Conduct at least one study to determine the positive 

predictive value and clinical utility (e.g., prediction of 

co-occurring conditions, family planning) of chromosomal 

microarray genetic testing for detecting genetic diagnoses for 

autism in a clinical setting by 2012.

NIH 4 5,282,439

1.S.F Convene a workshop to examine the ethical, legal, and social 

implications of autism research by 2011. The workshop 

should define possible approaches for conducting future 

studies of ethical, legal, and social implications of autism 

research, taking into consideration how these types of issues 

have been approached in related medical conditions.

No federal projects funded

1.L.A Identify behavioral and biological markers that separately, or 

in combination, accurately identify, before age 2, 1 or more 

subtypes of children at risk for developing autism, and 

evaluate whether these risk markers or profiles can improve 

early identification through heightened developmental 

monitoring and screening by 2014.

DOD 7 3,401,458

NIH 34 38,116,800

1.L.B Develop at least five measures of behavioral and/or biological 

heterogeneity in children or adults with autism, beyond 

variation in intellectual disability, that clearly relate to etiology 

and risk, treatment response, and/or outcome by 2015.

DOD 2 694,989

NIH 35 39,065,410

NSF 9 8,602,000
Appendix III: Federal Autism Research 

Projects by Interagency Autism Coordinating 

Committee Strategic Plan Objective

Page 49 GAO-14-16 Federal Autism Activities

Strategic Plan 

Research Area 

and Objectives Description of Objective a Agency

Number of 

Research 

Projects Funds Awarded

1.L.C Identify and develop measures to assess at least three 

“continuous dimensions” (e.g., social reciprocity, 

communication disorders, and repetitive/restrictive behaviors) 

of autism symptoms and severity that can be used by 

practitioners and/or families to assess response to 

intervention for people with autism across the lifespan by 

2016.

DOD 1 615,000

NIH 13 11,921,270

1.Other Not specific to any objective within research area 1. DOD 1 546,577

Education 1 1,971,978

NIH 22 14,291,166

NSF 1 14,510

Research area 2: Biology

2.S.A Support at least four research projects to identify 

mechanisms of fever, metabolic and/or immune system 

interactions with the central nervous system that may 

influence autism during prenatal-postnatal life by 2010.

DOD 2 615,787

HRSA 1 294,904

NIH 18 8,873,917

2.S.B Launch three studies that specifically focus on the 

neurodevelopment of females with autism, spanning basic 

to clinical research on sex differences by 2011.

NIH 5 5,320,506

2.S.C Identify ways to increase awareness among the autism 

spectrum community of the potential value of brain and 

tissue donation to further basic research by 2011.

No federal projects funded

2.S.D Launch three studies that target improved understanding of 

the underlying biological pathways of genetic conditions 

related to autism (e.g., fragile X, Rett syndrome, tuberous 

sclerosis complex) and how these conditions inform risk 

assessment and individualized intervention by 2012.

DOD 2 269,444

NIH 70 46,269,699

2.S.E Launch three studies that target the underlying biological 

mechanisms of co-occurring conditions with autism, including 

seizures/epilepsy, sleep disorders, wandering/elopement 

behavior, and familial autoimmune disorders, by 2012.

DOD 5 633,738

HRSA 1 412,872

NIH 12 16,788,241

2.S.F Launch two studies that focus on prospective 

characterization of children with reported regression to 

investigate potential risk factors by 2012.

NIH 1 1,612,511

2.S.G Support five studies that associate specific genotypes with 

functional or structural phenotypes, including behavioral and 

medical phenotypes (e.g., nonverbal individuals with autism 

and those with cognitive impairments) by 2015.

DOD 2 663,751

NIH 25 29,749,080

NSF 1 276,000

2.L.A Complete a large-scale, multidisciplinary, collaborative 

project that longitudinally and comprehensively examines 

how the biological, clinical, and developmental profiles of 

individuals, with a special emphasis on females, youths, and 

adults with autism, change over time as compared to typically 

developing people by 2020.

NIH 8 24,365,831
Appendix III: Federal Autism Research 

Projects by Interagency Autism Coordinating 

Committee Strategic Plan Objective

Page 50 GAO-14-16 Federal Autism Activities

Strategic Plan 

Research Area 

and Objectives Description of Objective a Agency

Number of 

Research 

Projects Funds Awarded

2.L.B Launch at least three studies that evaluate the applicability of 

autism phenotype and/or biological signature findings for 

performing diagnosis, risk assessment, or clinical intervention 

by 2015.

NIH 6 2,379,375

2.Other Not specific to any objective within research area 2. DOD 9 2,614,769

NIH 247 167,289,408

NSF 8 3,097,145

Research area 3: Causes

3.S.A Coordinate and implement the inclusion of approximately 

20,000 subjects for genome-wide association studies, as well 

as a sample of 1,200 for sequencing studies to examine 

more than 50 candidate genes by 2011. Studies should 

investigate factors contributing to phenotypic variation across 

individuals who share an identified genetic variant and stratify 

subjects according to behavioral, cognitive, and clinical 

features.

NIH 18 37,608,106

3.S.B Within the highest-priority categories of exposures for autism, 

identify and standardize at least three measures for 

identifying markers of environmental exposure in 

biospecimens by 2011.

NIH 2 116,367

3.S.C Initiate efforts to expand existing large case-control and other 

studies to enhance capabilities for targeted geneenvironment research by 2011.

EPA 1 2,271,501

NIH 7 19,628,501

3.S.D Enhance existing case-control studies to enroll racially and 

ethnically diverse populations affected by autism by 2011.

NIH 2 188,455

3.S.E Support at least two studies to determine if there are 

subpopulations that are more susceptible to environmental 

exposures (e.g., immune challenges related to infections, 

vaccinations, or underlying autoimmune problems) by 2012.

NIH 4 1,027,991

3.S.F Initiate studies on at least 10 environmental factors identified 

in the recommendations from the 2007 Institute of Medicine 

report “Autism and the Environment: Challenges and 

Opportunities for Research” as potential causes of autism by 

2012.

CDC 2 846,247

DOD 2 227,360

NIH 3 2,423,008

3.S.G Convene a workshop that explores the usefulness of 

bioinformatic approaches to identify environmental risks for 

autism by 2011.

No federal projects funded
Appendix III: Federal Autism Research 

Projects by Interagency Autism Coordinating 

Committee Strategic Plan Objective

Page 51 GAO-14-16 Federal Autism Activities

Strategic Plan 

Research Area 

and Objectives Description of Objective a Agency

Number of 

Research 

Projects Funds Awarded

3.S.H Support at least three studies of special populations or use 

existing databases to inform our understanding of 

environmental risk factors for autism in pregnancy and the 

early postnatal period by 2012. Such studies could include: 

comparisons of populations differing in geography, gender, 

ethnic background, exposure history (e.g., prematurity, 

maternal infection, nutritional deficiencies, toxins), and 

migration patterns; and comparisons of phenotype 

(e.g., cytokine profiles), in children with and without a history 

of autistic regression, adverse events following immunization 

(such as fever and seizures), and mitochondrial impairment. 

These studies may also include comparisons of phenotype 

between children with regressive autism and their siblings. 

Emphasis on environmental factors that influence prenatal 

and early postnatal development is particularly of high 

priority. Epidemiological studies should pay special attention 

to include racially and ethnically diverse populations.

CDC 1 1,950,669

DOD 1 143,162

HRSA 1 383,243

NIH 4 9,065,939

3.S.I Support at least two studies that examine potential 

differences in the microbiome of individuals with autism 

versus comparison groups by 2012. 

DOD 1 132,750

3.S.J Support at least three studies that focus on the role of 

epigenetics in the etiology of autism, including studies that 

include assays to measure DNA methylations and histone 

modifications, and those exploring how exposures may act 

on maternal or paternal genomes via epigenetic mechanisms 

to alter gene expression, by 2012. 

DOD 4 1,446,871

NIH 12 17,650,924

3.S.K Support two studies and a workshop that facilitate the 

development of vertebrate and invertebrate model systems 

for the exploration of environmental risks and their interaction 

with gender and genetic susceptibilities for autism by 2012. 

NIH 2 1,582,038

3.L.A Conduct a multi-site study of the subsequent pregnancies of 

1,000 women with a child with autism to assess the impact of 

environmental factors in a period most relevant to the 

progression of autism by 2014.

NIH 1 15,154,483

3.L.B Identify genetic risk factors in at least 50 percent of people 

with autism by 2014.

DOD 1 142,113

NIH 47 49,834,683

3.L.C Determine the effect of at least five environmental factors on 

the risk for subtypes of autism in the prenatal and early 

postnatal period of development by 2015.

NIH 4 1,715,618

3.L.D Support ancillary studies within one or more large-scale, 

population-based surveillance and epidemiological studies, 

including U.S. populations, to collect data on environmental 

factors during preconception, and during prenatal and early 

postnatal development, as well as genetic data, that could be 

pooled (as needed) to analyze targets for potential 

gene/environment interactions by 2015. 

CDC 7 39,560,462

NIH 11 24,271,103
Appendix III: Federal Autism Research 

Projects by Interagency Autism Coordinating 

Committee Strategic Plan Objective

Page 52 GAO-14-16 Federal Autism Activities

Strategic Plan 

Research Area 

and Objectives Description of Objective a Agency

Number of 

Research 

Projects Funds Awarded

3.Other Not specific to any objective within research area 3. DOD 3 328,091

HRSA 1 99,235

NIH 17 7,301,273

Research area 4: Treatments and interventions

4.S.A Support at least three randomized controlled trials that 

address co-occurring medical conditions associated with 

autism by 2010. 

HRSA 1 12,724,207

NIH 3 906,662

4.S.B Standardize and validate at least 20 model systems 

(e.g., cellular and/or animal) that replicate features of 

autism and will allow identification of specific molecular 

targets or neural circuits amenable to existing or new 

interventions by 2012. 

DOD 10 3,490,339

NIH 71 64,969,825

4.S.C Test safety and efficacy of at least five widely used 

interventions (e.g., nutrition, medications, assisted 

technologies, sensory integration, medical procedures) that 

have not been rigorously studied for use in autism by 2012.

DOD 2 1,967,113

NIH 8 3,008,201

4.S.D Complete two multi-site randomized controlled trials of 

comprehensive early intervention that address core 

symptoms, family functioning and community involvement 

by 2013. 

Education 3 3,849,576

HRSA 1 9,324,929

NIH 8 22,409,176

4.S.E Convene a workshop to advance the understanding of clinical 

subtypes and treatment personalization (i.e., what are the 

core symptoms to target for treatment studies) by 2011. 

No federal projects funded

4.S.F Launch randomized controlled trials of interventions, 

including biological signatures and other measures to 

predict response, and monitor quality of life and functional 

outcomes in each of the following groups: Five trials in infants 

and toddlers by 2013. Three trials in school-aged children 

and/or adolescents by 2013. Three trials in adults by 2014.

DOD 2 1,905,130

HRSA 1 564,816

NIH 18 22,593,856

NSF 2 585,833

4.S.G Support at least five studies on interventions for nonverbal 

individuals with autism by 2012. Such studies may include: 

projects examining service-provision models that enhance 

access to augmentative and alternative communication 

supports in both classroom and adult service-provision 

settings, such as residential service-provision and the impact 

of such access on quality of life, communication, and 

behavior; studies of novel treatment approaches that facilitate 

communication skills in individuals who are nonverbal, 

including the components of effective augmentative and 

alternative communication approaches for specific 

subpopulations of people with autism; and studies assessing 

access and use of augmentative and alternative 

communication for children and adults with autism who have 

limited or partially limited speech and the impact on functional 

outcomes and quality of life.

Education 1 594,514

NIH 10 8,085,134
Appendix III: Federal Autism Research 

Projects by Interagency Autism Coordinating 

Committee Strategic Plan Objective

Page 53 GAO-14-16 Federal Autism Activities

Strategic Plan 

Research Area 

and Objectives Description of Objective a Agency

Number of 

Research 

Projects Funds Awarded

4.S.H Support at least two studies that focus on research on health 

promotion and prevention of secondary conditions in people 

with autism by 2012. Secondary conditions of interest include 

weight issues and obesity, injury, and co-occurring 

psychiatric and medical conditions.

NIH 2 1,324,994

4.L.A Complete at least three randomized controlled trials on 

medications targeting core symptoms in people with autism 

of all ages by 2014.

HRSA 1 571,147

NIH 13 8,222,554

4.L.B Develop interventions for siblings of people with autism 

with the goal of reducing the risk of recurrence by at least 

30 percent by 2014.

NIH 3 890,088

4.L.C Conduct at least one study to evaluate the safety and 

effectiveness of medications commonly used in the treatment 

of co-occurring conditions or specific behavioral issues in 

people with autism by 2015.

DOD 1 588,750

NIH 9 6,517,612

4.L.D Support at least five community-based studies that assess 

the effectiveness of interventions and services in broader 

community settings by 2015. Such studies may include 

comparative effectiveness research studies that assess the 

relative effectiveness of: different and/or combined medical, 

pharmacological, nutritional, behavioral, service-provision, 

and parent- or caregiver-implemented treatments; scalable 

early intervention programs for implementation in 

underserved, low-resource, and low-literacy populations; and 

studies of widely used community intervention models for 

which extensive published data are not available. Outcome 

measures should include assessment of potential harm as a 

result of autism treatments, as well as positive outcomes.

Education 22 28,852,321

HRSA 3 1,635,606

NIH 9 5,676,567

4.Other Not specific to any objective within research area 4. AHRQ 1 575,000

Education 8 3,196,869

HRSA 2 912,968

NIH 33 21,515,583

NSF 5 1,656,731

Research area 5: Services

5.S.A Support two studies that assess how variations in and access 

to services affect family functioning in diverse populations, 

including underserved populations, by 2012.

HRSA 7 2,295,114

NIH 5 4,329,526

5.S.B Conduct one study to examine how self-directed communitybased services and supports impact children, youth, and 

adults with autism across the spectrum by 2014.

HRSA 1 625,994
Appendix III: Federal Autism Research 

Projects by Interagency Autism Coordinating 

Committee Strategic Plan Objective

Page 54 GAO-14-16 Federal Autism Activities

Strategic Plan 

Research Area 

and Objectives Description of Objective a Agency

Number of 

Research 

Projects Funds Awarded

5.S.C Implement and evaluate five models of policy and practicelevel coordination among state and local agencies to provide 

integrated and comprehensive community-based supports 

and services that enhance access to services and supports, 

self-determination, economic self-sufficiency, and quality of 

life for people with autism across the spectrum and their 

families, (which may include access to augmentative and 

alternative communication technology), with at least one 

project aimed at the needs of transitioning youth, and at least 

one study to evaluate a model of policy and practice-level 

coordination among state and local mental health agencies 

serving people with autism, by 2015.

CMS 1 198,348

HRSA 2 1,500,000

5.S.D Support two studies to examine health, safety, and mortality 

issues for people with autism by 2012.

No federal projects funded

5.L.A Test four methods to improve dissemination, implementation, 

and sustainability of evidence-based interventions, services, 

and supports in diverse community settings by 2013.

AHRQ 1 1,486,234

DOD 2 2,043,525

Education 3 1,399,235

HRSA 4 3,179,367

NIH 10 7,090,682

5.L.B Test the efficacy and cost-effectiveness of at least four 

evidence-based services and supports for people with autism 

across the spectrum and of all ages living in community 

settings by 2015.

Education 1 499,995

5.L.C Evaluate new and existing pre-service and in-service training 

to increase skill levels in service providers, including direct 

support workers, parents and legal guardians, education 

staff, and public service workers, to benefit the spectrum of 

people with autism and to promote interdisciplinary practice 

by 2015.

NIH 3 2,245,210

5.L.D Evaluate at least two strategies or programs to increase the 

health and safety of people with autism that simultaneously 

consider principles of self-determination and personal 

autonomy by 2015.

Education 1 592,007

NIH 1 59,998

5.L.E Support three studies of dental health issues for people with 

autism by 2015. This should include: one study on the costbenefit of providing comprehensive dental services, including 

routine, non-emergency medical and surgical dental services, 

denture coverage, and sedation dentistry to adults with 

autism as compared to emergency and/or no treatment; one 

study focusing on the provision of accessible, personcentered, equitable, effective, safe, and efficient dental 

services to people with autism; one study evaluating preservice and in-service training programs to increase skill 

levels in oral health professionals to benefit people with 

autism and promote interdisciplinary practice.

NIH 3 915,605
Appendix III: Federal Autism Research 

Projects by Interagency Autism Coordinating 

Committee Strategic Plan Objective

Page 55 GAO-14-16 Federal Autism Activities

Strategic Plan 

Research Area 

and Objectives Description of Objective a Agency

Number of 

Research 

Projects Funds Awarded

5.Other Not specific to any objective within research area 5. AHRQ 1 2,400,000

CMS 1 145,007

Education 3 1,444,552

HRSA 1 793,013

NIH 7 4,192,955

Research area 6: Lifespan issues

6.S.A Launch at least two studies to assess and characterize 

variation in the quality of life for adults on the autism 

spectrum as it relates to characteristics of the service 

delivery system (e.g., safety, integrated employment, postsecondary educational opportunities, community inclusion, 

self-determination, relationships, and access to health 

services and community-based services), and determine best 

practices by 2012.

HRSA 2 700,000

NIH 3 892,536

NSF 1 217,996

6.S.B Evaluate at least one model, at the state and local level, in 

which existing programs to assist people with disabilities 

(e.g., Social Security Administration, Rehabilitation Services 

Administration) meet the needs of transitioning youth and 

adults with autism by 2013.

Education 2 3,500,000

6.S.C Develop one method to identify adults across the autism 

spectrum who may not be diagnosed, or are misdiagnosed, 

to support service linkage, better understand prevalence, 

and track outcomes with consideration of ethical issues 

(insurance, employment, stigma) by 2015.

No federal projects funded

6.S.D Conduct at least one study to measure and improve the 

quality of lifelong supports being delivered in community 

settings to adults across the spectrum with autism through 

provision of specialized training for direct care staff, parents, 

and legal guardians, including assessment and development 

of autism-specific training, if necessary, by 2015.

NIH 1 749,919

6.L.A Develop at least two individualized community-based 

interventions that improve quality-of-life or health outcomes 

for the spectrum of adults with autism by 2015.

DOD 3 713,298

Education 1 75,000

HRSA 1 835,499

NIH 3 2,496,347

6.L.B Conduct one study that builds on carefully characterized 

cohorts of children and youth with autism to determine how 

interventions, services, and supports delivered during 

childhood impact adult health and quality of life outcomes 

by 2015.

NIH 3 5,468,332
Appendix III: Federal Autism Research 

Projects by Interagency Autism Coordinating 

Committee Strategic Plan Objective

Page 56 GAO-14-16 Federal Autism Activities

Strategic Plan 

Research Area 

and Objectives Description of Objective a Agency

Number of 

Research 

Projects Funds Awarded

6.L.C Conduct comparative effectiveness research that includes a 

cost-effectiveness component to examine community-based 

interventions, services, and supports to improve health 

outcomes and quality of life for adults on the autism spectrum 

over age 21 by 2018. Topics should include: community 

housing for people with autism; successful life transitions for 

people with autism, including from post-secondary education 

to adult services, employment, sibling relationships, and day 

programs; and meeting the service and support needs of 

older adults with autism.

HRSA 1 793,024

NIH 1 772,496

6.L.D Conduct implementation research to test the results from 

comparative effectiveness research in real-world settings, 

including a cost-effectiveness component to improve health 

outcomes and quality of life for adults over 21 on the autism 

spectrum by 2023.

No federal projects funded

6.Other Not specific to any objective within research area 6. AHRQ 1 625,000

Education 2 729,398

HRSA 1 100,000

NIH 2 878,187

NSF 2 393,237

Research area 7: Infrastructure and surveillance

7.A Conduct a needs assessment to determine how to merge or 

link administrative and/or surveillance databases that allow 

for tracking the involvement of people living with autism in 

health care, education, and social services by 2009.

No federal projects funded

7.B Conduct an annual “State of the States” assessment of 

existing state programs and supports for people and families 

living with autism by 2011.

CMS 2 540,491

7.C Develop and have available to the research community a 

means by which to merge or link databases that allow for 

tracking the involvement of people in autism research by 

2010.

NIH 1 2,040,353
Appendix III: Federal Autism Research 

Projects by Interagency Autism Coordinating 

Committee Strategic Plan Objective

Page 57 GAO-14-16 Federal Autism Activities

Strategic Plan 

Research Area 

and Objectives Description of Objective a Agency

Number of 

Research 

Projects Funds Awarded

7.D Establish and maintain an international network of biobanks 

for the collection of brain tissue, fibroblasts for pluripotent 

stem cells, and other tissue or biological material, by 

acquisition sites that use standardized protocols for 

phenotyping, collection, and regulated distribution of limited 

samples by 2011. This includes support for post-processing 

of tissue, such as genotyping, RNA expression profiling, and 

MRI. Protocols should be put into place to expand the 

capacities of ongoing large-scale children’s studies to collect 

and store additional biomaterials, including newborn 

bloodspots, promoting detection of biological signatures. 

Support should also be provided to develop an international 

web-based digital brain atlas that would provide highresolution 3-D images and quantitative anatomical data from 

tissue of patients with autism and disease controls across the 

lifespan, which could serve as an online resource for 

quantitative morphological studies, by 2014.

NIH 1 2,303,588

7.E Begin development of a web-based toolbox to assist 

researchers in effectively and responsibly disseminating

their findings to the community, including people with autism, 

their families, and health practitioners, by 2011.

NIH 1 25,000

7.F Create funding mechanisms that encourage rapid replication 

studies of novel or critical findings by 2011.

No federal projects funded

7.G Develop a web-based tool that provides population estimates 

of autism prevalence for States based on the most recent 

prevalence range and average identified by the Autism and 

Developmental Disabilities Monitoring Network by 2012.

No federal projects funded

7.H Create mechanisms to specifically support the contribution 

of data from 90 percent of newly initiated projects to the 

National Database for Autism Research, and link with other 

existing data resources by 2012.

NIH 6 9,583,653

7.I Supplement existing Autism and Developmental Disabilities 

Monitoring Network sites to use population-based 

surveillance data to conduct at least five hypothesis-driven 

analyses evaluating factors that may contribute to changes in 

autism prevalence by 2012.

CDC 14 28,544,177

7.J Develop the personnel and technical infrastructure to assist 

states, territories, and other countries that request assistance 

describing and investigating potential changes in the 

prevalence of autism and other developmental disabilities by 

2013.

CDC 1 324,072

NIH 1 150,000

7.K Encourage programs and funding mechanisms that expand 

the research workforce, enhance interdisciplinary research 

training, and recruit early-career scientists into the autism 

field by 2013.

Education 3 1,457,164

HRSA 1 2,868,488

NIH 22 7,479,509
Appendix III: Federal Autism Research 

Projects by Interagency Autism Coordinating 

Committee Strategic Plan Objective

Page 58 GAO-14-16 Federal Autism Activities

Strategic Plan 

Research Area 

and Objectives Description of Objective a Agency

Number of 

Research 

Projects Funds Awarded

7.L Expand the number of Autism and Developmental Disabilities 

Monitoring sites in order to conduct autism surveillance in 

children and adults; conduct complementary direct screening 

to inform completeness of ongoing surveillance; and expand 

efforts to include autism subtypes by 2015.

CDC 8 4,381,177

7.M Support 10 “Promising Practices” papers that describe 

innovative and successful services and supports being 

implemented in communities that benefit the full spectrum 

of people with autism, which can be replicated in other 

communities, by 2015.

No federal projects funded

7.N Enhance networks of clinical research sites offering clinical 

care in real-world settings that can collect and coordinate 

standardized and comprehensive diagnostic, biological 

(e.g., DNA, plasma, fibroblasts, urine), medical, and 

treatment history data that would provide a platform for 

conducting comparative effectiveness research and clinical 

trials of novel autism treatments by 2012.

HRSA 1 670,000

7.O Create an information resource for autism researchers 

(e.g., PhenX Project) to share information to facilitate data 

sharing and standardization of methods across projects by 

2013. This includes common protocols, instruments, designs, 

and other procedural documents, and should include updates 

on new technology and links to information on how to acquire 

and utilize technology in development. This can serve as a 

bidirectional information reference, with autism research 

driving the development of new resources and technologies, 

including new model systems, screening tools, and analytic 

techniques.

HRSA 1 2,142,000

NIH 1 997,747

7.P Provide resources to centers or facilities that develop 

promising vertebrate and invertebrate model systems, and 

make these models more easily available or expand the utility 

of current model systems, and support new approaches to 

develop high-throughput screening technologies to evaluate 

the validity of model systems by 2013. 

NIH 1 1,588,780

7.Other Not specific to any objective within research area 7. NIH 34 52,663,973

Source: GAO analysis of data from the Interagency Autism Coordinating Committee (IACC) and federal agencies that funded autism 

research.

Notes: The number of autism research projects in the table reflects a project that HRSA broke-up into 

7 sub-projects and categorized into different objectives for fiscal years 2010, 2011, and 2012. This 

project was not broken out in previous years; therefore, all funding for the project is attributed to 

objective 4.S.A for fiscal years 2008 and 2009. NIH jointly funded 1 autism research project with CDC 

and 1 project with EPA. These joint projects are counted separately in the total number of autism 

research projects for each of these agencies because the projects were awarded funding from 

different agencies. Additionally, from fiscal years 2008 through 2012, 6 autism projects were included 

in IACC data, but were categorized as “not specific to any research area,” and 16 projects were not 

included in IACC data and, therefore, not categorized to the research areas. Furthermore, from fiscal 

years 2008 through 2011, CDC awarded funds for 9 research projects on autism and other 

developmental disabilities as part of its non-research autism-related activity, Learn the Signs. Act 

Early. CDC categorized the entire activity to the services research area; however, these 9 research 

projects are not included in the table because it was unclear if the individual research projects under 

Learn the Signs. Act Early. would also be categorized to the services research area. DOD’s research 
Appendix III: Federal Autism Research 

Projects by Interagency Autism Coordinating 

Committee Strategic Plan Objective

Page 59 GAO-14-16 Federal Autism Activities

projects include projects funded from DOD’s fiscal years 2008 through 2011 appropriations. DOD’s 

fiscal year 2012 appropriation for its medical research programs, including autism, was available for 

obligation through the end of fiscal year 2013—September 30, 2013. At the time of our review, DOD 

had not submitted data on its fiscal year 2012 research projects in response to OARC’s request. As a 

result, the number of autism research projects for DOD does not include DOD’s projects for fiscal 

year 2012.

When collecting and analyzing data, we included a project in the fiscal year in which it was awarded 

funds, even if funds remained available for obligation in future fiscal years—or, as is the case with 

DOD, the fiscal year of the appropriation from which the project or activity was awarded funds. For 

example, if a project was ongoing in another fiscal year, but did not receive an award in that year, we 

included the project in the fiscal year in which it received an award only. AHRQ and CMS each 

awarded one contract under which multiple autism-related projects were carried out. Education and 

SAMHSA also awarded contracts, of which an autism project was one component. Funding is not 

broken out in these contracts by project; therefore, the award amounts that we report for the AHRQ, 

CMS, Education, and SAMHSA autism projects under each contract are the agencies’ estimates of 

the overall contract awards that were intended to support these projects.

a

The strategic plan objective numbers are composed of the following components: the number 

indicates the strategic plan question, or research area, that the objective relates to; for strategic plan 

questions 1 through 6, the “S” and “L” indicate whether the objectives are short-term or long-term; 

and the final letter refers to the specific objective. Each of the 7 research areas includes an “Other” 

category. Although this category is not included in the strategic plan as an objective, it is used to 

categorize autism research that relates to a specific research area, but not a specific objective.
Appendix IV: Agencies’ Non-Research AutismRelated Activities, Fiscal Years 2008 through 

2011

Page 60 GAO-14-16 Federal Autism Activities

Five agencies funded non-research autism-related activities from fiscal 

year 2008 through 2011—Administration for Community Living (ACL), 

Centers for Disease Control and Prevention (CDC), Department of 

Defense (DOD), Department of Education (Education), and Health 

Resources and Services Administration (HRSA). The agencies funded 

activities that we categorized by the following activity type: awareness 

campaign, information dissemination, training, and other types of 

activities. This appendix includes a list of each activity, by agency and by 

activity type. Also included is the amount of funding awarded by the 

agency—that was related to autism—under each activity between fiscal 

years 2008 and 2011; as well as a brief description of the primary 

purpose, strategy for achieving that purpose, and target population of 

each activity.1

ACL: Information Dissemination Activity

Autism NOW: National Autism Resource and Information Center

• Funding: $2.6 million

• Purpose: Gather, organize, and provide diverse stakeholders with 

readily accessible, high-quality resources and information related 

to community-based services that support independent living and 

self-determination, treatment protocols that promote communitybased experiences (e.g., education, employment, recreation, 

transportation, early intervention, and child care), and evidencebased interventions.

• Strategy: Website provides information and links to resources 

related to four main components: (1) at home, (2) on the job, (3) in 

the classroom, and (4) in the community. The website also offers 

webinars and blogs on various topics related to autism and other 

developmental disabilities.

 

1

Most of Education’s activities included projects that were not related to autism. The 

funding presented for Education represents the funding amounts that supported projects, 

under each activity, that were autism-specific or had a component to them that was 

autism-specific. CDC funded one non-research activity—Learn the Signs. Act Early.—

between fiscal years 2008 and 2011. The funding amount for Learn the Signs. Act Early.

reflects funding to support contracts and cooperative agreements, as well as activities 

conducted internally at the agency, such as funding for staffing and personnel costs. 

Appendix IV: Agencies’ Non-Research 

Autism-Related Activities, Fiscal Years 2008 

through 2011
Appendix IV: Agencies’ Non-Research AutismRelated Activities, Fiscal Years 2008 through 

2011

Page 61 GAO-14-16 Federal Autism Activities

• Target Population: Individuals with autism and other 

developmental disabilities, their families, and other targeted 

stakeholders concerned with autism.

CDC: Awareness Campaign/Information Dissemination Activity

Learn the Signs. Act Early.

• Funding: $9.8 million2

• Purpose: Improve early identification of children with autism and 

other developmental disabilities so children and families can get 

the services and support they need as early as possible.

• Strategy: The program is made up of three components: (1) the 

health education campaign promotes awareness of healthy 

developmental milestones in early childhood, the importance of 

tracking each child’s development, and the importance of acting 

early if there are concerns; (2) the Act Early Initiative works with 

state, territorial, and national partners to improve early childhood 

systems by enhancing collaborative efforts to improve screening 

and referral to early intervention services, and to promote Learn 

the Signs. Act Early. messages and tools, and improve early 

identification efforts in their states and territories; and (3) the 

research and evaluation component improves campaign materials 

and implementation activities, and increases the understanding of 

the factors that influence early identification and referral.

• Target Population: Parents, early educators, and health care 

providers.

 

2

This funding amount reflects CDC’s total funding for Learn the Signs. Act Early., with the 

exception of research funded under this activity—totaling approximately $1.7 million.
Appendix IV: Agencies’ Non-Research AutismRelated Activities, Fiscal Years 2008 through 

2011

Page 62 GAO-14-16 Federal Autism Activities

DOD: Information Dissemination Activity

Extension & Military Partnership Autism Project

• Funding: $1.3 million

• Purpose: Assessment of educational services for children with 

autism, emotional/behavioral disorders, and intellectual disabilities

near military installations; and national review of best practices 

around educational support for children with the identified 

disabilities. Data is used to update the current online Education 

Directory for Children with Special Needs, which provides 

assignment personnel and families of military dependents with 

information they need to make informed assignment decisions. 

• Strategy: Website consists of two main components that provide 

tools and resources to help with the transition to a new military 

installation: (1) the Early Intervention Directory focuses on early 

intervention services for children from birth to 3 years old; and 

(2) the School-Age Directory focuses on education services for

children with special needs, 3 to 21 years of age.

• Target Population: Military families, who have children with autism 

or other developmental disabilities, using educational services in 

selected states.

Education: Training Activities

Personnel Development to Improve Services and Results for 

Children with Disabilities

• Funding: $42.4 million

• Purpose: To help address state-identified needs for highly 

qualified personnel by preparing personnel in special education, 

related services, early intervention, and regular education to work 

with children with disabilities; and to ensure that those personnel 

have the skills and knowledge—derived from practices that have 

been determined through research and experience to be 

successful—needed to serve these children. This could include 

preparing personnel to work with children with autism and their 

families.
Appendix IV: Agencies’ Non-Research AutismRelated Activities, Fiscal Years 2008 through 

2011

Page 63 GAO-14-16 Federal Autism Activities

• Strategy: This activity supports two types of personnel preparation 

projects. (1) Projects designed to prepare special education early 

intervention, or related services personnel to serve as higher 

education faculty and researchers. These projects culminate in a 

doctoral degree or provide postdoctoral learning opportunities. 

(2) Projects designed to prepare special education, early 

intervention, or related services, direct service providers or 

administrators to work in state educational agencies, lead 

agencies, local educational agencies, early intervention services 

programs, or schools. They culminate in a baccalaureate, 

master’s, education specialist, or doctoral degree; or state 

certification, endorsement, or licensure. The projects may provide 

specialization in conducting autism research or providing services 

for children with autism and their families.

• Target Population: Scholars in special education, early 

intervention, and related services programs.

Personnel Development to Improve Services and Results for 

Children with Disabilities; National Professional Development 

Center on Autism Spectrum Disorders

• Funding: $4 million

• Purpose: Provides resources, professional development, and 

technical assistance to help address state-identified needs for 

highly qualified personnel in special education, related services, 

early intervention, and regular education to work with infants, 

toddlers, and children with disabilities; and ensure that those 

personnel have the necessary skills and knowledge, derived from 

practices that have been determined through scientifically based 

research and experience, to be successful in serving those 

children.

• Strategy: The project goals are organized around four content 

areas: (1) content development, (2) professional development, 

(3) technical assistance, and (4) evaluation. Content development 

involves translating information about evidence-based practices—

or educational interventions—for children with autism into 

resources for service providers. Professional development entails 

providing training to state professional development providers and 

practitioners, as well as establishing training sites that model 

evidence-based practices in participating states. Technical 

assistance includes providing ongoing site-based training and 
Appendix IV: Agencies’ Non-Research AutismRelated Activities, Fiscal Years 2008 through 

2011

Page 64 GAO-14-16 Federal Autism Activities

establishing a network of professional development sites, trainees, 

and professional consultants. Evaluation involves collecting followup data on the use of evidence-based practices, practitioner skills, 

and child and family outcomes.

• Target Population: States’ departments of education receiving 

funds under Part B and state lead agencies under Part C of the 

Individuals with Disabilities Education Act, and those that they 

provide professional development to, such as teachers and 

practitioners who serve individuals from birth through 21 years of 

age with autism.3

State Personnel Development Grants Program

• Funding: $6.5 million

• Purpose: Assist state educational agencies in reforming and 

improving their systems for personnel preparation and 

professional development in early intervention, education, and 

transition services in order to improve results for children with 

disabilities.

• Strategy: Supports implementation of a State Personnel 

Development Plan. This plan must identify and address the state 

and local needs for the personnel preparation and professional 

development of personnel, as well as individuals who provide 

direct supplementary aids and services to children with disabilities. 

The projects must use evidence-based professional development 

practices that will increase implementation of evidence-based 

practices and result in improved outcomes for children with 

disabilities; provide ongoing assistance to personnel receiving 

professional development that supports the implementation of 

evidence-based practices; and use technology to more efficiently 

and effectively provide ongoing professional development to 

 

3

The Individuals with Disabilities Education Act is a federal law that provides federal funds 

on a formula grant basis to assist states in providing early intervention, special education, 

and related services to eligible children with disabilities. Part B of the act is a program 

administered by state educational agencies to make a free appropriate public education 

available to children with disabilities beginning at age 3, and potentially until age 22, 

depending on state law or practice. Part C of the act is a program administered by a lead 

agency in a state to make available early intervention services to infants and toddlers with 

disabilities from birth until age 3, and their families.
Appendix IV: Agencies’ Non-Research AutismRelated Activities, Fiscal Years 2008 through 

2011

Page 65 GAO-14-16 Federal Autism Activities

personnel, including to personnel in rural areas and to other 

populations, such as personnel in urban or high-need local 

educational agencies.

• Target Population: State educational agencies in the 50 states, 

the District of Columbia, the Commonwealth of Puerto Rico, 

Guam, Virgin Islands, American Samoa, and the Commonwealth 

of the Northern Mariana Islands that have a State Personnel 

Development Plan and those personnel they train, such as 

teachers, administrators, and early intervention providers.

Rehabilitation Continuing Education Program

• Funding: $2.8 million

• Purpose: This program is designed to ensure that skilled 

personnel are available to serve the rehabilitation needs of 

individuals with disabilities. It is also designed to provide support 

to the public vocational rehabilitation system; provide advice, 

technical support, and training to the state vocational rehabilitation 

agencies and their community partners.

• Strategy: There are 10 regional Technical Assistance and 

Continuing Education centers that serve either a federal region or 

another geographical area and provide for a broad integrated 

sequence of training activities that focus on meeting recurrent and 

common training needs of employed rehabilitation personnel 

throughout a multi-state geographical area. One center has 

developed materials to train vocational rehabilitation staff on 

autism. These materials are made available to other Technical 

Assistance and Continuing Education centers and to state 

vocational rehabilitation agencies for staff training purposes.

• Target Population: State vocational rehabilitation agencies and the 

professionals they train.

Education: Other Activity Types

Developing Hispanic-Serving Institutions Program-Title V

• Funding: $0.3 million

• Purpose: To assist Hispanic-serving institutions to expand 

educational opportunities for, and improve the attainment of, 
Appendix IV: Agencies’ Non-Research AutismRelated Activities, Fiscal Years 2008 through 

2011

Page 66 GAO-14-16 Federal Autism Activities

Hispanic students. It also enables these institutions to expand and 

enhance their academic offerings, program quality, and 

institutional stability.

• Strategy: Activities supported include: scientific or laboratory 

equipment for teaching; construction or renovation of instructional 

facilities; faculty development; purchase of educational materials; 

academic tutoring or counseling programs; funds and 

administrative management; joint use of facilities; endowment 

funds; distance learning academic instruction; teacher education; 

and student support services. 

• Target Population: Hispanic students and the postsecondary 

institutions that serve them.

Fund for the Improvement of Education

• Funding: $1.6 million

• Purpose: To support nationally significant programs to improve the 

quality of elementary and secondary education at the state and 

local levels, and help all students meet challenging state 

academic content standards and student achievement standards.

• Strategy: Types of projects funded include activities to promote 

systemic education reform at the state and local levels, including 

scientifically based research, development, and evaluation 

designed to improve student academic achievement at the state 

and local levels; and strategies for effective parent and community 

involvement.

• Target Population: Students

Fund for the Improvement of Postsecondary Education 

Congressionally Directed Projects

• Funding: $1.4 million

• Purpose: Address critical national needs and support Education’s 

mission of increasing access to quality postsecondary education.

• Strategy: These are noncompetitive grants that Education 

manages pursuant to Congress’ direction to provide such grants 
Appendix IV: Agencies’ Non-Research AutismRelated Activities, Fiscal Years 2008 through 

2011

Page 67 GAO-14-16 Federal Autism Activities

to certain recipients for specified purposes and in specified 

amounts.

• Target Population: Individuals or institutions involved in or 

impacted by postsecondary education.

Technology and Media Services for Individuals with Disabilities 

program: Steppingstones of Technology Innovation for Children 

with Disabilities

• Funding: $1.0 million

• Purpose: (1) Improve results for children with disabilities by 

promoting the development, demonstration, and use of 

technology; (2) support educational media service activities 

designed to be of educational value in the classroom setting to 

children with disabilities; and (3) provide support for captioning 

and video description that are appropriate for use in the classroom 

setting.

• Strategy: Develop, implement, and evaluate innovative technology 

approaches designed to improve results for children with 

disabilities. Phase 1 projects must develop, refine, and test the 

feasibility of specific technology-based approaches. Phase 2 

projects must subject technology-based approaches to rigorous 

field-based research to determine their effectiveness.

• Target Population: Children served under the Individuals with 

Disabilities Education Act, including children with autism.

HRSA: Training Activities

Developmental-Behavioral Pediatrics Training Program

• Funding: $7.3 million

• Purpose: The primary goal is to train the next generation of 

leaders in developmental-behavioral pediatrics; and provide 

pediatric practitioners, residents, and medical students with 

essential biopsychosocial knowledge and clinical expertise. The 

program also supports continuing education for pediatricians and 

other providers to implement evidence-based interventions for 

autism and other developmental disabilities.
Appendix IV: Agencies’ Non-Research AutismRelated Activities, Fiscal Years 2008 through 

2011

Page 68 GAO-14-16 Federal Autism Activities

• Strategy: The 3-year program curriculum includes course work 

and clinical exposure to psychosocial and biological sciences, 

growth and development, adaptation, injury prevention, disease 

prevention, and health promotion. Projects are also encouraged to 

cosponsor, with child psychiatry, an ongoing Collaborative Office 

Rounds group as a training experience for fellows and a 

continuing education experience for community providers. 

Grantees also provide continuing education activities for practicing 

physicians and are encouraged to offer technical assistance and 

consultation to pediatric residency training programs so that they 

can improve their own developmental-behavioral program 

components.

• Target Population: Fellows in developmental-behavioral pediatrics 

preparing for leadership roles as teachers, investigators, and 

clinicians advancing the field of developmental-behavioral 

pediatrics; pediatric practitioners, residents, and medical students.

Leadership Education in Neurodevelopmental and Other Related 

Disabilities (LEND) Training Program

• Funding: $107.2 million

• Purpose: Improve the health of children who have, or are at risk 

for developing, neurodevelopmental and other related disabilities 

by providing high quality interdisciplinary graduate leadership 

training to child health professionals from diverse backgrounds 

and preparing those professionals to assume leadership roles. 

This includes supporting the training of individuals who can 

provide screening, diagnostic evaluation, and evidence-based 

interventions for autism and other developmental disabilities.

• Strategy: Provides interdisciplinary leadership training and 

encourages providers to think holistically about the needs of 

children with autism and other developmental disabilities, as well 

as their families. The training curriculum includes graduate 

education at the master’s, doctoral, and postdoctoral training 

levels, with an emphasis on developing a knowledge and 

experience base that includes: (1) knowledge of all aspects of 

neurodevelopmental and related disabilities, including autism; 

(2) acquisition of interdisciplinary team skills; and (3) knowledge of 

the family environment and cultural competency.
Appendix IV: Agencies’ Non-Research AutismRelated Activities, Fiscal Years 2008 through 

2011

Page 69 GAO-14-16 Federal Autism Activities

• Target Population: Trainees are individuals working toward a 

graduate degree across 14 disciplines—including medicine, 

dentistry, psychology, social work, nutrition, language and motor 

therapies, audiology, genetics, health administration, special 

education, and nursing—or are enrolled in a postgraduate 

program with an emphasis on infants, children, and adolescents 

with special health care needs. Trainees show promise to become 

leaders in the material and child health field in the areas of 

teaching, research, clinical practice, and/or administration and 

policymaking.

National Combating Autism Interdisciplinary Training Resource 

Center

• Funding: $2.5 million

• Purpose: Improve the health of children who have, or are at risk 

for developing, autism and other developmental disabilities by 

providing technical assistance to LEND and DevelopmentalBehavioral Pediatrics grantees to better train professionals to 

utilize valid and reliable screening tools for diagnosing or ruling 

out autism and provide evidence-based interventions for children.

• Strategy: The center supports LEND and DevelopmentalBehavioral Pediatrics grantees by providing technical assistance, 

disseminating information and resources, and providing program 

coordination to promote collaboration across the grantees.

• Target Population: LEND and Developmental-Behavioral 

Pediatrics grantees.

HRSA: Other Activity Types

State Implementation and Planning Grants

• Funding: $11.8 million

• Purpose: Improve access to comprehensive, coordinated health 

care and related services by implementing state plans to improve 

the system of services.
Appendix IV: Agencies’ Non-Research AutismRelated Activities, Fiscal Years 2008 through 

2011

Page 70 GAO-14-16 Federal Autism Activities

• Strategy: Although the plans vary widely by state, common 

elements include a focus on partnerships between professionals 

and families of children and youth with autism; access to a 

culturally competent family-centered medical home; access to 

adequate health insurance and financing of services; early and 

continuous screening for autism and other developmental 

disabilities; community services organized for easy use by 

families; and transition services for youth entering adult health 

care.

• Target Population: States with an existing plan for improving the 

system of services for children with autism and developmental 

disabilities.

State Public Health Coordinating Center

• Funding: $1.1 million

• Purpose: Improve the health of children who have, or are at risk 

for developing, autism and other developmental disabilities.

• Strategy: Coordinating with the state implementation and planning 

grantees and developing a strategy for defining, supporting, and 

monitoring the role of state public health agencies in assuring 

early and timely identification, diagnosis, and intervention.

• Target Population: State implementation and planning grantees, 

and broader state public health programs.
Appendix V: Comments from the Department 

of Defense

Page 71 GAO-14-16 Federal Autism Activities

Appendix V: Comments from the Department 

of Defense
Appendix V: Comments from the Department 

of Defense

Page 72 GAO-14-16 Federal Autism Activities
Appendix VI: Comments from the Department 

of Education

Page 73 GAO-14-16 Federal Autism Activities

Appendix VI: Comments from the 

Department of Education
Appendix VI: Comments from the Department 

of Education

Page 74 GAO-14-16 Federal Autism Activities
Appendix VII: Comments from the Department 

of Health and Human Services

Page 75 GAO-14-16 Federal Autism Activities

Appendix VII: Comments from the 

Department of Health and Human Services
Appendix VII: Comments from the Department 

of Health and Human Services

Page 76 GAO-14-16 Federal Autism Activities
Appendix VII: Comments from the Department 

of Health and Human Services

Page 77 GAO-14-16 Federal Autism Activities
Appendix VII: Comments from the Department 

of Health and Human Services

Page 78 GAO-14-16 Federal Autism Activities
Appendix VII: Comments from the Department 

of Health and Human Services

Page 79 GAO-14-16 Federal Autism Activities
Appendix VII: Comments from the Department 

of Health and Human Services

Page 80 GAO-14-16 Federal Autism Activities
Appendix VII: Comments from the Department 

of Health and Human Services

Page 81 GAO-14-16 Federal Autism Activities
Appendix VII: Comments from the Department 

of Health and Human Services

Page 82 GAO-14-16 Federal Autism Activities
Appendix VII: Comments from the Department 

of Health and Human Services

Page 83 GAO-14-16 Federal Autism Activities
Appendix VII: Comments from the Department 

of Health and Human Services

Page 84 GAO-14-16 Federal Autism Activities
Appendix VII: Comments from the Department 

of Health and Human Services

Page 85 GAO-14-16 Federal Autism Activities
Appendix VIII: Comments from the National 

Science Foundation

Page 86 GAO-14-16 Federal Autism Activities

Appendix VIII: Comments from the National 

Science Foundation
Appendix VIII: Comments from the National 

Science Foundation

Page 87 GAO-14-16 Federal Autism Activities
Appendix IX: GAO Contact and 

Staff Acknowledgments

Page 88 GAO-14-16 Federal Autism Activities

Marcia Crosse, (202) 512-7114, crossem@gao.gov

In addition to the contact named above, Geri Redican-Bigott, Assistant 

Director; Deirdre Brown; Sandra George; Kristin Helfer Koester; 

Giselle Hicks; Drew Long; and Sarah Resavy made key contributions to 

this report.

Appendix IX: GAO Contact and Staff 

Acknowledgments 

GAO Contact

Staff 

Acknowledgments 

(291093)
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